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Hepatitis C — There are Cures for the Disease, But Not the Stigma


By Bob Aronson

 hep C ribbon
What it feels like to have Hepatitis C

“I was always exhausted to the point that I could not walk a block without having to stop and sit down to rest. The fatigue I felt was so intense that completing just a simple once over lightly housecleaning took days because I had to stop and rest so often. Nausea was a constant companion and my appetite came and went.  Sometimes I would go all day without eating which seems to add to my fatigue.  And then there’s the pain. The pain in the area around my liver was almost unbearable. Then I started the Interferon treatment and it all got worse“ (The words of a Hepatitis C. Patient).

Hepatitis C – The Stigma

stop the judgment“The stigma that surrounds Hep C is reminiscent of the early 80’s when the AIDS epidemic came to the forefront. The idea that only IV drug users get HCV is incorrect, much like the idea that only gay men can get HIV is incorrect. Many of us got Hep C through transfusions, some who worked in hospitals got it from accidental needle sticks.  I am reluctant to disclose my disease because I’m tired of hearing, “So you were an IV drug user, huh” I wasn’t — yet people seem to want to blame us for the disease we have, some seem to think we deserve it.  I am sick, what difference does it make how I got the disease, not a single one of us asked for it, no one would want to live this way.  I wish people would be more understanding instead of so judgmental. (The words of another HCV patient)

 The quotes above are from hepatitis C Patients.  For privacy purposes I have withheld their names.  As you read on you will find other anonymous quotes.  I can vouch for their veracity,

There is a Cure for Hepatitis C , But the Epidemic is Growing

 Here’s What You Need To Know

hep c and liver The Hepatitis C Virus (HCV) is a blood disease.  You can only get it if the blood of an infected person somehow gets into your blood and attacks your liver.  It is not airborne — sneezes and coughs don’t spread it, only blood does.  Not only does Hepatitis C have the power to disable or kill its victims, the people who are stricken with it also carry its stigma and in a way are blamed for getting the illness that could take their lives.  We will address the stigma issue more later, along with the facts and myths surrounding the disease.

The hepatitis C virus was discovered in 1989. Prior to that, it was associated with blood transfusions, but was called non-A, non-B hepatitis because the virus could not be identified.  Up until now the most effective treatment for Cure cartoonHCV was based on the drug Interferon, which was effective in some patients but carried some heavy duty side effects with it.  While some internet medical sites say “Interferon has manageable side effects,” that’s not the story that patients tell.  There are thousands of reports of debilitating fatigue, weakness (asthenia) so great as to limit one’s ability to walk very far, drowsiness, lack of initiative, irritability and confusion.   Often, especially in patients with a history of depression, the condition worsens to include thoughts of suicide and in a few cases committing the act itself.  While some people tolerated Interferon better than others, few tolerated it well and almost all patients prayed for something, anything that didn’t make you feel worse than the disease itself.

Interferon in conjunction with the toxic chemotherapy drug Ribaviron has been the standard treatment for HCV until recently.  The interferon side effects are bad enough, say patients, but when combined with the drug Ribaviron the reaction can and often does get even worse. Some patients report the reaction to the combination of drugs was so negative it had become life threatening.

Finally by the end of 2014 some highly effective, interferon-free, Hepatitis C oral treatments or “cures” were approved.   Gilead Sciences had two,  Sovaldi and Harvoni and AbbVie’s introduced Veikira Pak. These effective meds come with a high price tag, however.  It is hoped that the competition from several newer and yet unapproved drugs will bring the price down

One drug in particular, Gilead Science’s Harvoni, seems to be getting favor from the medical community and it is indeed a cure.  In clinical trials, Harvoni Harvonicured hepatitis C after 3 months of treatment in about 94% of people who took it. Cure rates approached 100% after 6 months in patients whose hep C was harder to treat, because of cirrhosis (source: Gilead Sciences)

Harvoni most certainly is a cure for those who can afford it.  The drug while highly effective, comes with an equally high price tag. That 3 month treatment program mentioned earlier can cost $95,000 and as of this writing many insurance companies are not yet on board.  One source told us, “the protocol for my mom is 24 weeks this treatment cost $ 204,120.00”  There is financial assistance available and links are listed elsewhere in this blog.

Harvoni is well researched and while calling it a “Cure” is accurate it is only recommended for patients with genotype 1a and 1b. Other genotypes still have to use Sovaldi (also a Gilead product) in conjunction with Ribaviron and some genotypes still have to use both Ribaviron and Interferon.

Sovaldi was released in December of 2013 but still had to use Ribaviron for all G types. Harvoni is a combination of Sovaldi and Ledipisvir and eliminated the need for Ribaviron in 1a-1b’s and was released in Oct 2014.

Space doesn’t allow us to take  a detailed look at all the HCV treatments and we can’t do justice to Harvoni the Gilead Sciences cure either.  We applaud the companies that developed these drugs, but no matter how wonderful the cure is, the disease continues because we still don’t have a vaccine that prevents people from getting the disease in the first place.  The cure is only effective with people who have the disease and  by the time it is identified they usually have already suffered incredible damage.  We must keep pushing for a vaccine that will wipe out the disease before it can infect anyone.  Right now there is no vaccine for HCV.  They are working on it, but so far such preventive measures have proven to be illusive and the disease continues to pile up victims. It now kills more Americans than AIDS. If you want more information about the HCV and the various treatments these links will help.

Viekera pak https://www.viekira.com/

Harvoni  http://www.gilead.com/~/media/Files/pdfs/Policy-Perspectives/ExpandingAccesstoHCVTreatments10214.pdf

If you have Hepatitis C and your physician has recommended any of the treatments but you are unable to pay the price of the medicine you should know this.  Harvoni manufacturer, Gilead offers free meds to the underinsured or patients who have been denied coverage by their insurance provider, if they meet financial requirements. There has been a great deal of confusion and misinformation about the “Coupon” offered by Gilead, so here’s the straight story.  The copay coupon is available to anyone who is insured.  It is not based on income and will pay up to 25% of the copay amount. The only restriction on the copay assistance is if the patient is covered by Medicaid or another government program, then they are not eligible. There are no financial requirements connected to the coupon.

People on Medicare with part D ( which they pay for) are eligible for assistance from Gilead if they are denied by Medicare or underinsured.  They are not eligible for the coupon. They also have to sign a form saying they will not try to get reimbursed for any out of pocket expenses. The coupon is for those who have private insurance with a copay.

There are other resources as well and you can explore them by clicking on the links below.

 financial aid resources

http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/

http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml

http://tinyurl.com/orbec8m

http://tinyurl.com/njbl3jm

Health experts estimate that over 3.2 million Americans have Hepatitis C and that worldwide the number of infected people is close to a quarter of a billion.  Many, if not most, may be financially unable to get the cure.

 “What is Hepatitis C and how do you get it?”

 As noted earlier, Hepatitis C is a blood disease that attacks the liver.  Simply put, in order to contract it the blood of an infected person must find its way into your blood.  Here are the facts that dispel the myths. (http://www.hepmag.com/articles/2512_18750.shtml)   You can get HCV from:

  • blood transfusionInjecting drugs with needles that have been used by others.
  • Needle-stick injuries and exposure of open wounds or mucous membranes to infected blood.
  • Transfusions.  Blood or blood-product transfusion (especially before 1992).

Unlikely sources of infection.

  • Piercing and tattoos. It is unlikely you can get HCV from tattoos done in a licensed, commercial tattooing facility. However, transmission of Hepatitis C (and other infectious diseases) is possible when poor infection-control practices are used during tattooing or piercing such as that done in prisons and other unregulated settings. More research is needed to be sure.
  • Sexual activity. it is generally believed that HCV cannot be transmitted through semen or other genital fluids, unless blood is present. While the risk of becoming infected with HCV through unprotected sexual intercourse is very low, medical  experts urge everyone to use safe sex practices whether HCV is involved or not.
  • Giving Birth. Women who have HCV run less than a 10 percent chance of passing the virus to their babies during pregnancy or delivery,
  • Breast Feeding It is also considered unlikely that HCV can be transmitted through breast feeding or breast milk unless the woman’s nipples are bleeding.
  • Sharing a drug snorting straw.  Yes, there is a chance, albeit, a very low one of being infected with the hepatitis C virus through sharing drug-snorting paraphernalia.  Hepatitis C is a disease of the liver, but the virus lives in the bloodstream. Snorting drugs, such as cocaine, heroin or methamphetamine, can cause damage to the tiny blood vessels in the nose, potentially resulting in traces of blood being deposited on the tip of the straw or other device. Sharing snorting paraphernalia isn’t a common mode of HCV transmission, but the threat exists.

Hepatitis C is a terrible disease.  Its symptoms often don’t show up for years and when they do it is because significant damage has been done.  Here are a few abbreviated patient’s stories about their disease, how they got it and the cost of the cure.

Patient story @ 1. “Harvoni is extremely expensive. It is I believe $1152.00 per pill. The protocol varies by 8, 12 and 24 weeks, depending on the amount of liver damage and viral load. Do I believe the price is fair? That’s a very hard question to answer. I think that it is necessary to look at the bigger picture.

 I have had HepC since between 1979 and 1985. I was in an auto accident and received several liters of blood and had several surgeries.  I was not diagnosed until 2002 when I was so fatigued that I could barely functionI subsequently did a 48 week course of the horrific drugs, interferon and ribivarin which led to horrific side effects, three times weekly injections of Neupogen and two times weekly injections of Procrit. My white cell count dropped so low that I was hospitalized, transfused and taken off treatment at 40 weeks. It took me 2 1/2 yrs to recover. I progressed from there to cirrhosis, liver cancer, ESLD and two liver transplants in 09. So, in the bigger picture, when adding up the cost of liver disease from HepC and all it’s complications the price seems fair.

 Patient Story number 2I had previously treated with interferon/ribavirin for 48 weeks with weekly injections of procrit along with the occasional transfusion. This treatment almost killed me and I have many chronic health issues as a result.

 I think Harvoni is extremely expensive, for those that don’t qualify for the co-pay offered by the manufacturer. I was able to receive that co-pay which was a total of $15 for my 12 week treatment. My husband and I were willing to pay whatever necessary for me to be treated by Harvoni because I have been symptomatic from the Hep c for over 10 years after being infected during a blood transfusion while giving birth to my daughter in the 70’s.

 Patient Story number 3. The price is fair when you compare total cure to a transplant (lets say $96,000 vs $500,000 minimum for a transplant).

The cost is always a factor. I was lucky and appealed to my insurance company after 2 denials. I had to supply some of the research to the reviewing doctors to educate them that even though it wasn’t FDA approved for transplant recipients, it was made specifically for my genotype and it was actually fewer drugs than sovaldi/olisio (they wanted me to take that and I held out for Harvoni)

 I think most of the people who have HepC got it years ago before they had identified non A/nonB as HepC. Mine was from a blood transfusion. I think today the blood supply is safe.

 My message to others is this, find a way to get on one of these cures. They aren’t nearly as bad as the old regimens that were brutal and that many of us have lasting effects from being on them. These are relatively side effect free and it is best to take care of this before your liver becomes ravaged by the disease putting you in line for a transplant. That is a long line and the chances of dying while waiting for a life saving liver are getting larger. So many people die everyday waiting. I’m finally on the road to health with a new liver and noting will stop me now.

The preceding testimony is real, the stories are true.  The names have been withheld to protect privacy, but we’ve only scratched the surface of the misery of Hepatitis C.  The disease is bad enough.  Patients don’t need the additional emotional pain caused by public misperception of the disease which is stigma postershrouded in myths that result in blaming the victim for getting the disease.  Even some medical professionals believe that if you have HCV you were probably a drug addict who was infected by using a “dirty needle.”  The truth is that fewer than half of those infected were drug users, but so what?  Do we blame the victim of a shooting who happened to stop at a store in a high crime area for being there?  Do we blame the carpenter who lost his fingers to a table saw for using it?  Do we blame the physician who treats Ebola patients for getting the disease herself?

Blaming the victim is mean spirited and unfair.  The supposition that all HCV patients were drug users is the product of rumor and not supported by facts.  But again, so what?  No one wants to have HCV.  No one purposely sets out to get it.  Just because you are in a position of risk, doesn’t mean you should be blamed for the resulting illness. It’s time we got the facts and showed some compassion and understanding.  Blaming people for their health problems helps no one, whether it’s Cancer, COPD, drug addiction, obesity or diabetes.  The fact is that most 21st century medical conditions are due to some combination of genetics, environment, and personal choice.  So unless you believe that each of us brings on our own misfortune, then it only makes sense to get the facts and set the record straight.

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New heart, new life, new man

Feeling better than ever at age 73

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me atbob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor a thttp://www.donatelife.net.  It only takes a few minutes.

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EBOLA — WHAT YOU NEED TO KNOW


By Bob Aronson

statue of libertyOver the years this blog has offered a lot of information on how to take care of your organs.  We believe strongly that the way to solve the shortage of transplantable organs is to 1) encourage donation and 2) do everything possible to reduce the demand.  That means we must continually be on guard  to prevent threats to our health and we depend on public health officials and the news media to provide us with that information.  Ebola is the latest threat and it’s a dandy. It can destroy all of your organs — all of them.

After watching the Ebola story develop in the past few weeks I came to the conclusion that we are getting mixed messages from a number of sources and the mass media doesn’t do a very good job of filtering them, they just hop,  skip and jump from one new development to another with little effort given to finding and tying loose ends.

To date most of the regular TV news stories on the Dallas, Texas Ebola incident lack detail and as a result serve no purpose but to inflame, confuse and cause panic.  Print stories have been better but it has been hard to find many really comprehensive reports.   That’s probably because Ebola is a moving target.  Just as I was about to publish this blog, there were two new developments.

The first new development is that one of the health care workers at the Dallas hospital where the first Ebola patient died, has tested positive for the Ebola Virus.  This is a breaking news story so it won’t be covered in detail here.  The second development today is from President Obama’s National Security advisor Susan Rice who is expressing some dismay at the sorry state of the world response to the Ebola Threat. She is not so subtly sounding the alarm and calling for “All hands on Deck.”

With the exception of some investigative or in-depth network reports, TV news channels have been saying pretty much the same thing.  As the story goes, a man who had recently traveled from Liberia in West Africa to Dallas, Texas checked into an emergency room at Presbyterian hospital there with a temperature of 103 degrees.  He was treated for a stomach virus and sent home.  That’s pretty much what most people know about the Dallas situation and the Ebola virus.  The story, though, is grossly incomplete.  That is not to say the hospital in question should be exonerated of any responsibility, they should not, but nothing is ever as simple as it sounds.

It is important first, to understand what we are dealing with.  Ebola hemorrhagic fever (EHF), caused by the Ebola virus, is a severe viral hemorrhagic disease characterized by initial fever and malaise followed by gastrointestinal symptoms, bleeding, shock, and multi-organ system failure. Over 25 different viruses cause viral hemorrhagic fever. Ebola virus is a member of the virus family Filoviridae, along with Marburg virus.

EHF is difficult to distinguish from a host of other febrile illnesses, at least early in the course of disease. Other viral hemorrhagic fevers need to be excluded, especially Marburg hemorrhagic fever, as well as malaria and typhoid fever.

Patients should be isolated and viral hemorrhagic fever precautions (face shields, surgical masks, double gloves, surgical gowns, and aprons) should be used to prevent transmission. As there is presently no antiviral drug available for EHF, treatment is supportive, following the guidelines for treatment of severe septicemia. Persons who had unprotected contact with someone with EHF should be monitored.  Case fatality rates vary consistently with the specific infecting virus, ranging from zero to over 80%.

I spent 25 years of my life as a communication consultant and specialized in working with health care organizations like infection controlclinics, hospitals, research centers, pharmaceutical companies, research labs and more.  I know how important infection/contagion control is in these facilities and how much time, effort and money is spent on programs to ensure patient safety.  That’s why what happened in Dallas with the Ebola patient stands out.  Numerous studies make it very clear that in the great majority of cases in which patient safety is at risk communication is the culprit.

While Ebola may sometimes be difficult to diagnose, every hospital and clinic in this country has check lists on contagious diseases and infections.  They do regular drills, have training sessions and should be well prepared for any eventuality.  What happened in Dallas shouldn’t have happened, but it did.  Now what?

Dr. Anthony FauciDr. Anthony Fauci from the National Institutes of Health (NIH) an acknowledged expert on infectious diseases says that while he understands our fears we also need to understand that what is happening in West Africa is because of the weaknesses in their health system.  “West Africa,” he says, “Is not the United States, we won’t have an outbreak. Scientists know how to stop the virus from spreading.”

While I hope he is right, I wish Dr. Fauci had not said that.  Knowing how to do something and actually accomplishing it may be worlds apart.  This isn’t just about the medical profession knowing what to do, it is about all of us knowing what to do and when — and then communicating properly and following the plan.  Nothing, Dr. Fauci, is as easy as it seems. and your overly simplistic assurances could be harmful, lulling us into a false sense of security. I’ll explain more shortly.

An ABC News report tells a story that differs from Dr. Fauci’s view.   The Network account quoted Dr. Ryan Stanton, an emergency room physician in Lexington, Kentucky, and spokesman for the American College of Emergency Physicians as saying, “We’re all a little bit on edge because we’ve never seen it before.  Stuff we’ve seen before, like heart attack and stroke, we recognize as soon as we walk in the door. For Ebola, it’s not going to come as naturally.  It’s not even a needle in a haystack,” he went on. “It’s a needle in a hayfield we’re trying to find.”  That statement kind of casts some doubt on Dr. Fauci’s position.  Add the Susan Rice comments to the mix and Dr. Fauci is sounding far too positive.  If after reading this far you think, “There’s more to the Ebola outbreak than meets the eye,” you’d be right.  There is.

The question on everyone’s mind is, “How could the ER people in Dallas have missed this case?  Well, they did not miss it, it kind of missed them.  Dallas presbyterian We have it on good authority that the Dallas ER nurse properly accounted for the feverish patient’s recent travel in Africa, but that information did not get communicated to the rest of the team. Instead, the patient was treated with antibiotics for a presumed run-of-the-mill stomach virus. So it appears that while the checklist was completed poor team communication prevented its proper execution.

It is entirely possible that the Nurse’ proper reaction was ignored for any number of reasons. 1) It came from a nurse, not a doctor (yes, there is institutional, professional arrogance) 2. The team was busy, tired and careless and chose to ignore the Nurse’ efforts and 3) the Nurse did not communicate with the right people and the communication was unclear, unreadable or could not be heard. I suspect that there might be a dozen more reasons or excuses as well.

I am not qualified to argue medical facts with Dr. Fauci — I don’t even want to and the reason is simple, he is right.  What he said is absolutely correct.  The medical profession does know how to stop Ebola.  What they don’t do very well,  is communicate what they know to those of us who don’t.

After 25  years of working as a communications coach and consultant to the medical profession I can tell you that communication is not one of their strong suits.  I have great respect for physicians and loved working with them but their ability to speak in understandable and memorable terms is not a well developed skill.  Think about your interactions with your doctors and how many times you leave his or her office saying, “I don’t think my questions got answered,” or, “What did he mean when he said,….”

But, let’s go back to the Dallas case.  I do not doubt that the Dallas medical team knew how to deal with Ebola.  The question that is at the core of the issue, though is, “How effective was the communication they used to put the systems in place to accomplish that end?  It is not their medical expertise I doubt, it is their ability to communicate what they know and suspect in an effective and understandable manner.   And — if the patient safety record in American health care institutions is any indication of that prowess then we are in a heap of trouble. This is where the Fauci assurances fall flat.  A 2013 story in Forbes Magazine said: http://www.forbes.com/sites/leahbinder/2013/09/23/stunning-news-on-preventable-deaths-in-hospitals/

Forbes logo“In 1999, Americans learned that 98,000 people were dying every year from preventable errors in hospitals. That came from a widely touted analysis by the Institute of Medicine (IOM) called To Err Is Human. This was the “Silent Spring” of the health care world, grabbing headlines for revealing a serious and deadly problem that required policy and action.

As it turns out, those were the good old days.

According to a new study just out from the prestigious Journal of Patient Safety, four times as many people die from preventable medical errors than we thought.  That could be as many as 440,000 deaths a year.

With these latest revelations, medical errors now claim the spot as the third leading cause of death in the United States, dwarfing auto accidents, diabetes and everything else besides Cancer and heart disease.

These people are not dying from the illnesses that caused them to seek hospital care in the first place. They are dying from mishaps that hospitals could have prevented. What do these errors look like? The sponge left inside the surgical patient, prompting weeks of mysterious, agonizing abdominal pain before the infection overcomes bodily functions. The medication injected into a baby’s IV at a dose calculated for a 200 pound man. The excruciating infection from contaminated equipment used at the bedside. Sadly, over a thousand people a day are dying from these kinds of mistakes.

If you aren’t alarmed enough that our country is burying a population the size of Oakland every year, try this: you are paying for it. Hospitals shift the extra cost of errors onto the patient, the taxpayer and/or the business that buys health benefits for the infected patient. My nonprofit, which provides a calculator of the hidden surcharge Americans pay for hospital errors, finds most companies are paying millions or even billions of extra dollars for the cost of harming their employees.

No Cure,  No Vaccine Because There’s No Money In It

A recurring question in the case of Ebola or diseases like it is, “Why don’t we have a vaccine or a cure?”  Part of the answer to that orphan diseasesquestion is that diseases like Ebola and Marburg fall into the “Orphan disease” category. These are very rare diseases.  The rarity of the diseases provides little incentive for private industry to invest in research and development because the cost per prescription or treatment per patient would be so high few could afford them.  There is some government assistance for research but nowhere near enough.

The Orphan Drug Act of 1983 http://tinyurl.com/3vkffup provides incentives for drug companies to develop treatments for rare diseases. Since the Act was signed into federal law, the U.S. Food and Drug Administration (FDA) has approved more than 200 treatments for rare diseases.

While that number sounds good it is small when put in perspective because there are about 7,000 orphan diseases and some are quite familiar like:

  • Cystic fibrosis, which affects the respiratory and digestive systems.
  • Huntington disease which affects the brain and nervous system.
  • Single genes are also responsible for some rare, inherited types of Examples of these are the BRCA1 and BRCA2 genes, in which certain mutations increase the risk for hereditary breast and ovarian cancers, and the FAP gene, in which mutations increase the risk for hereditary colon cancer.

You can find more information here http://rarediseases.info.nih.gov/about-ordr/pages/31/frequently-asked-questions

As noted the Orphan Drug Act is why there is any activity around Orphan diseases, but it is nowhere near enough because there are so many of them.

Thanks to marketing campaigns aimed at people exposed to asbestos we are all likely familiar with the disease called mesothelioma — perhaps the best-known orphan disease in the nation.

About 3,000 patients are diagnosed with mesothelioma each year, placing it well within the U.S. definition of a rare or orphan disease as one that affects no more than 200,000 patients at a given time.  To further complicate matters there are several different forms of the disease so what might work to control one, likely wouldn’t for another. Patients with mesothelioma live for 1 to 2 years past their diagnosis.
mesothelioma“One of the difficult aspects of mesothelioma is that it often not diagnosed until it is in the later stages, and it is a very aggressive cancer,” says Joe Belluck, a New York mesothelioma lawyer.

The disease is difficult to detect since symptoms come after asbestos fibers have invaded organ linings and often mimic that of a bad cold or virus. It also surfaces decades after exposure to asbestos, so it has historically affected an older population with age-related health

It is a very deadly form of cancer and one that falls into the “Orphan” category. Mesothelioma is listed as an orphan disease on registries like rarediseases.org maintained by the National Organization for Rare Diseases (NORD).

Because it affects fewer than 200,000 people at a given time (due to its high mortality rate), treatments specifically for mesothelioma are eligible for orphan drug funding from the Food and Drug Administration (FDA). Under the Orphan Drug Act, companies involved in developing and testing drugs, biologics, and other treatments specifically to treat rare diseases can get tax credits and other incentives to continue development them including:

  • 7 years of exclusive marketing for the drug
  • Tax credits to cover half the cost of clinical investigations
  • Waiving user fees

As you can see, there is far more to the Ebola story than meets the eye.  It is a complex issue because Ebola is an Orphan disease that attacks in a multitude of ways and is not always easy to identify.  So what can you do?  Be informed. Don’t wait for information, seek it out, you might save your life and the lives of people you love.  Below are some essential facts, but click on the links, too.

Here are some fast facts on Ebola from CNN:  http://tinyurl.com/npqfzt2

CNN Eb0la Fact Sheet

Ebola hemorrhagic fever is a disease caused by one of five different Ebola viruses. Four of the strains can cause severe illness inCNN humans and animals. The fifth, Reston virus, has caused illness in some animals, but not in humans.

The first human outbreaks occurred in 1976, one in northern Zaire (now Democratic Republic of the Congo) in Central Africa: and the other, in southern Sudan (now South Sudan). The virus is named after the Ebola River, where the virus was first recognized in 1976,according to the Centers for Disease Control and Prevention.

Ebola is extremely infectious but not extremely contagious. It is infectious, because an infinitesimally small amount can cause illness. Laboratory experiments on nonhuman primates suggest that even a single virus may be enough to trigger a fatal infection.

Instead, Ebola could be considered moderately contagious, because the virus is not transmitted through the air, well at least not much.  A sneeze could spread it if the droplets  from an infected person come in contact with someone who is not, but that’s a very short distance.  In the most contagious diseases, such as measles or influenza, virus particles are airborne for longer distances and much more time.

Humans can be infected by other humans if they come in contact with body fluids from an infected person or contaminated objects from infected persons. Humans can also be exposed to the virus, for example, by butchering infected animals.

While the exact reservoir of Ebola viruses is still unknown, researchers believe the most likely natural hosts are fruit bats.

Symptoms of Ebola typically include: weakness, fever, aches, diarrhea, vomiting and stomach pain. Additional experiences include rash, red eyes, chest pain, throat soreness, difficulty breathing or swallowing and bleeding (including internal).

Typically, symptoms appear 8-10 days after exposure to the virus, but the incubation period can span two to 21 days.

Unprotected health care workers are susceptible to infection because of their close contact with patients during treatment.

Ebola is not transmissible if someone is asymptomatic or once someone has recovered from it. However, the virus has been found in semen for up to three months.

Deadly human Ebola outbreaks have been confirmed in the following countries: Democratic Republic of the Congo (DRC), Gabon, South Sudan, Ivory Coast, Uganda, Republic of the Congo (ROC), Guinea and Liberia.

According to the World Health Organization, “there is no specific treatment or vaccine,” and the fatality rate can be up to 90%. Patients are given supportive care, which includes providing fluids and electrolytes and food.

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I  hope this report helped to clarify the Ebola issue. If you have comments make them in the space provided or contact me directly at bob@baronson.org.bob cropped smaller

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Stem Cell Therapy. Some Truth — Lots of Snake Oil


We’ve heard that stem cells can cure nearly anything from multiple sclerosis to cancer to heart disease and can even clear the mist from the minds of Alzheimer’s sufferers.   The sad truth is that at the moment stem cells, whether adult or embryonic cure nothing.  Stem cells in the form of bone marrow have long been used in the treatment of blood diseases, and the cells are also used to help burn victims and Multiple Sclerosis patients … but cure?  Not yet.  Sorry.

The promise of cures by stem cell therapy is common and cruel.

Many stem cell therapy practitioners and proponents appear to be legitimate authorities in the field as their names are festooned with impressive titles followed by a serpentine line of vowels and consonants that supposedly designate every possible expert credential.  Unfortunately 99.9% of what you see and hear is snake oil a term that gained prominence in the 19th century when hucksters sold Asian versions of the cure-all to unsuspecting citizens. Then, the claims were less sophisticated but so were the diseases.

The snake oil of the 1800s would cure everything from warts to a lousy love life.  Today the same claims are made but with more scientific terminology.  In the end, though, it’s still snake oil.  A recent segment on CBS “60 Minutes” exposed a scam that preyed on patients stricken with Amyotrophic lateral Sclerosis ALS) also known as “Lou Gehrig’s Disease.”  The program showed just how ruthless and heartless these scam artists can be http://tinyurl.com/ct2gw5t. You can follow that link or click on any of those below for the CBS report and additional information.

Full Segment: 21st Century Snake Oil Part 1
Full Segment: 21st Century Snake Oil Part 2
Web Extra: The Promise of Stem Cell Treatment
Web Extra: A Warning About Stem Cell Fraud

If you have ALS or know someone who does and need a resource for more information this one is highly recommended by many.  http://www.alsuntangled.com/index.html

Confused about what and who to believe on the stem cell therapy issue?  We’ve sorted through a lot of information in writing this blog and are confident that the sources we provide will answer your questions but there are a lot of links so either highlight them or write them down.

One highly respected resource on Stem Cell Scams is the website run by Doug Sipp the man you just saw in the 60 Minutes piece.  Sipp is the researcher from the RIKEN Center for Developmental Biology in Japan and is an outspoken critic of stem cell quackery. http://www.sctmonitor.blogspot.com/

Sipp also says, “Some clinics recruit patients in the United States and then send them overseas for treatment: the Stem Cell Treatment Institute in San Diego, for example, treats its patients in Mexico. Others invoke a ‘compassionate use’ exemption to FDA regulations, which allows them to charge patients for experimental therapies if no other treatment options are available. Some argue that the FDA has no jurisdiction over their activities, claiming that adult stem cells are not drugs — merely the patient’s own tissue — and therefore not subject to FDA oversight.”  Sipp goes on to say, “The growth in the number of clinics and companies marketing stem-cell products without approval is explosive.  The United States is becoming one of the most rapidly expanding markets for unregulated stem-cell applications.”

 “Stem Cells for Dummies”

(A book I bought for this blog and highly recommend)

“Researchers are sketching out all kinds of possible uses for stem cells on the drawing boards, and some of these potential uses are in or preparing to enter clinical trials — experiments to see whether these treatments really work in people. So far, though, the only proven stem cell therapies are for burns and blood disorders; everything else is experimental or theoretical, at least for the moment (no matter what you may read in ads or marketing brochures). http://www.dummies.com/how-to/content/stem-cells-for-dummies-cheat-sheet.html

The fact is that stem cells do hold great promise but there is a grand canyonesque gap between promise and reality.  Much of the promise revolves around the quest to have our damaged organs gain the ability to regenerate themselves and there is genuine evidence that it can be done.  Organ regeneration is all around us.  The Salamander can literally lose its tail in a fight knowing it will grow back again.  A crayfish is constructed in a manner that allows for joints to break so it can easily lose a claw which its body will soon replace. The same regenerative process exists in Newts, Starfish, Earthworms and tadpoles.  While human regeneration is far less developed we, too, have a limited ability to regenerate.

We may not think about it as “Regeneration” but that’s exactly what happens when you cut your fingernails or suffer a skin laceration.  The fingernails grow back and the skin heals.  The human organ most commonly associated with regenerative qualities is the liver but there is only minimal understanding of why it, among all of our organs, has that ability.  Why not the heart, the kidneys, lungs and pancreas, too?

All of this points to one singularly important fact.  We cannot sufficiently address the “how” to cure or treat until we more completely understand the “Why” of the underlying disease.  In a Time Magazine story, the Director of UCLA’s Institute for Stem Cell Biology Owen White said, “Biology is more complicated than splitting the atom because we (stem cell researchers) have to figure out how to create the outcomes we are seeking and how to measure the results simultaneously.”

There is sufficient evidence of the healing power of stem cells to be very optimistic.  The promise ranges from significant to mind boggling.  It has already been demonstrated that some types of stem cells can generate a plentitude of other kinds of cells so that researchers envision a day when patients with heart disease will be able to grow a new valve, maybe even an entire heart.  Should that promise become reality the entire donation/transplantation system would be tossed on its ear.

If we could regenerate our own organs, there would be no need for organ donors or transplant surgery.  Anti-rejection drugs would be totally unnecessary because the body only rejects material foreign to it.  A regenerated heart would be the same genetic and cellular makeup and therefore our immune system would ignore it.  Not only would such a development change the practice of medicine, it should also reduce the cost of maintaining our health.

The successful regeneration of organs as a routine therapy could totally eliminate the financial burden caused by transplant surgery, follow up visits, ant-rejection drugs (which can range up to $1 million in the first year of a transplant) and immunosuppressant side effects. An entire field of highly specialized medical practice would be greatly diminished if not eliminated.  Now one could be a cynic and say that the cost of regeneration would likely just replace what is lost by transplant surgery but I like to think or at least hope that our society won’t let that happen.

But…back to reality, all of the promise mentioned here is just that, promise. Until there hard clinical, peer reviewed evidence most of the claims made by stem cell clinics must be viewed as quackery, regardless of the credentials of the therapists or the testimony of patients.

All too often the public is taken in by one or two or more people who will testify that their lives are better, their illness disappeared or at least the symptoms were relieved.  Individual cases while compelling rarely if ever stand up to rigidly designed long term, peer reviewed scientific studies.

The International Society for Stem Cell Research (ISSCR) http://tinyurl.com/cwffqh8 is a leading authority on this issue and in a piece titled, “The Top Ten Things to Know About Stem Cell Treatments.”  Here’s what they have to say about patient testimonials.

“There are three main reasons why a person might feel better that are unrelated to the actual stem cell treatment: The ‘placebo effect’, accompanying treatments, and natural fluctuations of the disease or condition.

1)    The intense desire or belief that a treatment will work can cause a person to feel like it has and to even experience positive physical changes, such as improved movement or less pain. This phenomenon is called the placebo effect. Even having a positive conversation with a doctor can cause a person to feel improvement.

2)    Likewise, other techniques offered along with stem cell treatment—such as changes to diet, relaxation, physical therapy, medication, etc.—may make a person feel better in a way that is unrelated to the stem cells

3)    Also, the severity of symptoms of many conditions can change over time, resulting in either temporary improvement or decline, which can complicate the interpretation of the effectiveness of treatments. These factors are so widespread that without testing in a controlled clinical study, where a group that receives a treatment is carefully compared against a group that does not receive this treatment, it is very difficult to determine the real effect of any therapy.

“Be wary of clinics that measure or advertise their results primarily through patient testimonials.”

“Hey, I’m dying, what have I got to lose?”

The question is legitimate and so is the response until one scrutinizes the situation.  Most of the stem cell therapies that offer cures or even relief are very expensive and while offered in the U.S. are often delivered in other countries.  You could spend all of your money on a treatment that doesn’t work and be unable to afford further care when you really need it.  Consider, too, that If travel is involved there could be additional problems like finding yourself broke, sick, alone and a long way from family and friends.  And, finally, participating in an unproven treatment may make you ineligible to participate in potential and promising clinical trials.

A Summary From the ISSCR.

“Stem cell science is extraordinarily promising. There have been great advances in treating diseases and conditions of the blood system using blood-forming stem cells, and these show us just how powerful stem cell therapies can be. Scientists all over the world are researching ways to harness stem cells and use them to learn more about, to diagnose, and to treat various diseases and conditions. Every day scientists are working on new ways to shape and control different types of stem cells in ways that are bringing us closer to developing new treatments. Many potential treatments are currently being tested in animal models and some have already been brought to clinical trials. In February 2010 the British company ReNeuron announced it had been approved to conduct a Phase I clinical trial of a neural stem cell treatment for stroke. The first embryonic stem cell-based treatment for acute spinal cord injury has been authorized by the U.S. Food and Drug Administration (FDA) to move into Phase I clinical trials. Although it is sometimes hard to see, stem cell science is moving forward. We are tremendously optimistic that stem cell therapies will someday be available to treat a wide range of human diseases and conditions.”

Obviously this blog was not written by a medical expert, although I quoted many of them.  I wrote it from the perspective of a transplant recipient, a patient, a former journalist and as the founder of Organ Transplant Initiative and Bob’s Newheart to attempt to shed a little light on a complex and controversial subject.  I purposely avoided getting  into any of the science of Stem Cell research or therapy because, frankly, I don’t understand it well enough to write about it accurately.

We promised resources and there are many.  Stem Cells for Dummies offers enough to keep you busy for weeks.  I will just list a few more aside from the usual suspects like the American Heart Association, the Diabetes Association, Kidney Foundation and others. .

If you are looking for news organizations that offer more than lip service to stem cell research and developments look to the following.  I use them regularly and much if not most of the information I post on Organ Transplant Initiative comes from these sites.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — What You Need to Know


More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C is one of several hepatitis viruses and is generally considered to be among the most serious of these viruses. Hepatitis C is passed through contact with contaminated blood. http://www.mayoclinic.com/health/hepatitis-c/DS00097

According to the U.S. Centers For Disease Control (CDC) http://www.cdc.gov/hepatitis/c/cfaq.htm Hepatitis C is most commonly spread through the use of infected needles. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants. Now we know that people can become infected with the Hepatitis C virus during such activities as

  • Sharing needles, syringes, or other equipment to inject drugs
  • Needlestick injuries in health care settings
  • Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

  • Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
  • Having sexual contact with a person infected with the Hepatitis C virus

***Note, the Executive Director at HCVets.com, Tricia Lupole, indicates that the CDC information may be incorrect. She made this comment on our Facebook page.

“HCV by sex is a risk if both partners experience trauma and exchange blood…. the only cells found is seminal fluids are dead cells…. confirmed by many microbiologist. http://www.ncbi.nlm.nih.gov/pubmed/15128350 There are 100s of studies that show this is the case but it is junk science that reins control of the message to control the funding. Lots of plans to make HCV the fall guy for bad behavior.“

In a second post she went on to say, “Yes, the CDC has quoted the same statement for about 15-20 years now. The study I posted is based on the CDC National Survey. Another sad point, last I checked. Even though we all know better the CDC says that there is not enough evidence to show tattoos are a risk factor.

AMA does not want to regulate tattoo parlors as medical procedures because they are responsible for guidance/ prevention. (The task has been given to OSHA).

Today Ms. Lupole issued this statement:

The Centers for Disease Control federal funding has decreased in recent decades, while there’s been increased demands for vaccination programs; resulting in limited resources for at-risk adults and other mandated priorities. The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. In response to these funding woes, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention’s (NCHHSTP) captured HCV disease and redesign public health services to fit HIV programs, instead of critical public health needs. It’s important to note that HCV disease was previously integrated into federal research that included its viral family called Flaviviridae, whose members are Yellow Fever and Dengue viruses and transmit disease through mosquitoes. The HCV genome is almost identical to Dengue virus.


NCHHSTP’s Federal mandate is an integration of existing programs with new programs, like Viral Hepatitis, developed to mirror HIV/AIDS management model based on specific risks and disease pathology. STD and Substance Abuse programs associated with the spread of HIV/AIDS received increased attention and funding, blurring the other components of these programs.

Needless to say, NCHHSTP has meet with resistance from advocates and congressional leaders, because of this effort by public health agencies to narrowly define HCV’s pathology.


Today, NCHHSTP spends half the federal resources acquired for HCV to vaccinate patients with both Hepatitis A & B vaccines. The majority of remaining resources are directed at drug and STD intervention and prevention. The STD division must qualify for its share of funding by defining HCV a sexually transmitted disease.


Despite scientific proof that HCV is not an STD, NCHHSTP promotes HCV as an STD based on a handful of studies that bring about scientific uncertainty, working against broader public health threats. Research excluded several methods by which the virus transmits to insure standard elements comply with CDC corporate agreement requirements. Thus… junk science.
Such actions suggests this poor public health response to the HCV Disease epidemic, may be the direct result of a system in disarray – seemingly captured by special interest with legal and political agendas that have negatively influenced the response. The integration approach has created disparities in access to health care and created “social labels” that have fostered discrimination, responsible for the reduction in quality of life.

The enduring legacy of “junk science” and indifference of governments, nonprofits, advocates, political parties or economic elites, have grave and global consequences given the propensity for viral transmission in provider settings as seen in current headlines.

FY 2012 Hepatitis C transmission and prevention: latest news. Massive increase of hepatitis C incidence in HIV-positive gay men in Switzerland 30 August 2012 …http://www.aidsmap.com/Hepatitis-C-transmission-and-prevention/cat/1628/

• FY 2008- No evidence of a HCV epidemic in HIV negative gay men
Dr Turner et al. Data from attendees at a London GUM clinic suggest that there is no increase in HCV infections amongst HIV negative gay men.

• FY 2007- Injection Behavior, Not Sexual Contact, Accounts for Couples’ HCV Risk NEW YORK (Reuters Health) – Injection behavior, rather than sexual contact, accounts for the clustering of HCV virus (HCV) infection in heterosexual couples, according to a report in the June 1st issue of The Journal of Infectious Diseases.

• FY 2004 No Evidence of Sexual Transmission of HCV among Monogamous Couples: Results of a 10-Year Prospective Study The risk of sexual transmission of HCV virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years.

Either way, CDC or not…. junk science remains junk science. Wish the outcry would focus on piercing jewelry or the reuse of razors and personal care items verses a national message about a method that is least as likely as not. This battle over CDC junk science, goes way back and is in memory of many who passed HCV on to family members, while sacrificing pleasures of the mind, body, and soul. As you can imagine, sexual transmission is a constant worry for some. Their partner may catch/transmit this deadly virus through sex, protection or not….. yet… turn right around and share razors and other items as such.  Especially the economically depressed populations.”

Most recently, though, we’ve identified another way people may become infected and through no fault of their own. Recently in a New Hampshire hospital an employee who was a drug addict and who also had Hepatitis C was found to be injecting himself with filled syringes meant for patients, refilling the syringes with a harmless liquid non-pain killer and then replacing the needles and syringes on the tray to be used again. Below is one of the original stories on this 2012 incident.

‘Serial infector’ accused of spreading hepatitis at NH hospital

U.S. Attorney’s Office | ASSOCIATED PRESS

CONCORD, N.H. — Authorities in at least six states are investigating whether a traveling hospital technician accused of infecting 30 people with hepatitis C in New Hampshire also exposed earlier patients to the liver-destroying disease.

David Kwiatkowski, a former technician at Exeter Hospital, was arrested Thursday morning at a Massachusetts hospital where he was receiving treatment. Once he is well enough to be released, he will be transferred to New Hampshire to face federal drug charges, said U.S. Attorney John Kacavas, who called Kwiatkowski, 33, a “serial infector” who worked in at least half a dozen states.

Authorities believe Kwiatkowski stole drugs from a hospital operating room in another state, but they declined to name any of the other states, saying only that they are not clustered in one part of the country. They would not say in what hospital Kwiatkowski was being treated at so he couldn’t be contacted for comment.

This story brought new attention to hospital policies on infection control, narcotics control and patient safety and has had ripple effects across the nation if not around the world.

So…the next question is, how serious is hepatitis C? Chronic Hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 15,000 people die every year from Hepatitis C related liver disease.

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

  • 75–85 people will develop chronic Hepatitis C virus infection; of those,
    • 60–70 people will go on to develop chronic liver disease
    • 5–20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1–5 people will die from cirrhosis or liver cancer

The CDC strongly suggests that all baby boomers born since 1945 should get tested for Hepatitis C. http://tinyurl.com/8tg28x6Baby boomers account for 2 million of the 3.2 million Americans infected with the blood-borne liver-destroying virus. CDC officials believe the new measure could lead 800,000 more boomers to get treatment and could save more than 120,000 lives.

“The CDC views hepatitis C as an unrecognized health crisis for the country, and we believe the time is now for a bold response,” said Dr. John W. Ward, the CDC’s hepatitis chief.

Several developments drove the CDC’s push for wider testing, he said. Recent data has shown that from 1999 and 2007, there was a 50 percent increase in the number of Americans dying from hepatitis C-related diseases. Also, two drugs hit the market last year that promise to cure many more people than was previously possible.

What are the Symptoms of Hepatitis C?

Here’s what WEBMD says. http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-symptoms

Most people who are infected with hepatitis C-even people who have been infected for a while-usually don’t have symptoms.

If symptoms do develop, they may include:

  • Fatigue.
  • Joint pain.
  • Belly pain.
  • Itchy skin.
  • Sore muscles.
  • Dark urine.
  • Jaundice, a condition in which the skin and the whites of the eyes look yellow.

A hepatitis C infection can cause damage to your liver (cirrhosis). If you develop cirrhosis, you may have:

  • Redness on the palms of your hands caused by expanded small blood vessels.
  • Clusters of blood vessels just below the skin that look like tiny red spiders and usually appear on your chest, shoulders, and face.
  • Swelling of your belly, legs, and feet.
  • Shrinking of the muscles.
  • Bleeding from enlarged veins in your digestive tract, which is called variceal bleeding.
  • Damage to your brain and nervous system, which is called encephalopathy. This damage can cause symptoms such as confusion and memory and concentration problems.

What Treatment is Available?

So if you have Hepatitis C, then what? There are a number of options and there might even be a cure before too long. Standard state of the art treatment today for Hepatitis C is with Peginterferon and Ribavirin which achieves a “sustained response” up to 54% of people, which means that the virus has been eliminated from their blood after stopping treatment. People with hepatitis C types 2 and 3 have sustained response rates of about 80%; people with type 1 have rates of up to 50%.

While hepatitis C treatment has come a long way, there are still drawbacks. For a person who’s newly diagnosed, a 54% cure rate may not sound great. After all, it means that about one out of two people won’t respond to treatment.

Also, hepatitis C treatment is less effective in some populations. For reasons that no one understands yet, African-Americans are less likely to benefit from treatment. And the treatments may not be safe for people with other medical conditions — such as kidney failure, heart disease, or pregnancy. Interferon can also be expensive; according to the American Academy of Family Physicians, it can cost $6,000 per year. http://www.medicinenet.com/script/main/art.asp?articlekey=52451

It is important to note again, that while liver transplants can be very helpful to Hepatitis C patients, the procedure is not a cure but rather a delaying action and an effective one. There is some evidence that a transplant from a living donor to a patient who has been receiving the Interferon treatment could represent a cure. http://www.youtube.com/watch?v=3kOElXz0vVg

A Possible Medicinal Cure

Gilead Science is performing multiple studies to test an experimental drug, but the trial that is possibly the most intriguing looks at a combination therapy that rolls two medicines into a single pill. Gilead hopes to advance tests of its lead hepatitis drug GS-7977 in a combination with another company medicine, GS-5885.

Bristol Myers Squibb had a promising drug but clinical trials resulted in some negative results so the company has sent the project back to the drawing board. http://www.nytimes.com/2012/08/24/business/bristol-myers-ends-work-on-hepatitis-c-drug.html?_r=2&

Finally, Gilead Sciences, mentioned earlier, has a drug that combined with another from Bristol Myers Squibb could be a cure, at least clinical trials seem to offer that indication but the two companies, according to Hepatitis C activist Margaret Dudley can’t seem to cooperate. She is circulating a petition to get the “cure” on the market. http://hepc-cured.com/

October is National Liver Awareness month. We hope you have found these blogs helpful and offer these links for further information.

http://www.liverfoundation.org/

http://www.nlfindia.com/index.asp

http://www.mayoclinic.com/health/liver-problems/DS01133

http://tinyurl.com/92bjlup U.S. Government Link

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — No One is Immune Everyone is Affected


More people in the United States now die from Hepatitis C each year than from AIDS  according to a new report from the Centers for Disease Control and Prevention.   More than 3.2 million Americans are currently infected with Hepatitis C and the really bad news is that most people who have it don’t’ know it.

In coming days I will publish more information and heart wrenching stories about Hep C and the patients it affects, the lives it wrecks and what it costs our society in both human lives and dollars…it is astounding.

Hep C is a disease of the liver that society likes to keep in the shadows because of some of the ways in which it is contracted, but we cannot begin to deal with a disease if it is kept secret and treated as though it was sinful and dirty.  It isn’t.  The people aren’t and they need our help and our compassion.

Hepatitis C can be treated and there are some exciting possibilities on the horizon but now there is no available cure,  not even a liver transplant is a cure because Hepatitis C is systemic.

To get us started on the road to understanding please view this video.  It says more in a few minutes than anything I can write at this moment.  Please share the video with others and then watch this space for more.  I fully intend to say a lot more on the subject of this disease that affects so many of my friends.

Thank you  http://www.youtube.com/watch?v=J4TCo-qVoKk

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Cystic Fibrosis — The Victims are Heroes


CF is Cystic Fibrosis. Most of us know nothing about it even though we are familiar with the term. CF is a devastating disease causing constant discomfort and requiring intense and frequent treatment.

A CF patient must start every day with an extended and sometimes agonizing period of therapy. Often that therapy has to be repeated several times during the day. I’ve known several CF patients and to me they are special because of the heroic efforts they must put forward every day just to be able to approach normal functioning. Most diseases are difficult to manage but CF patients need to get physical in order to function. They are amazing people.

CF is one of those diseases in which a Lung Transplant is sometimes necessary and quite helpful but the procedure does not cure the disease. We’ll discuss that option more later.

I don’t have CF but I do have Asthma and Chronic Obstructive Pulmonary Disease (COPD) so I can at least relate to the part of CF that causes difficult breathing.  The Clinical description of CF sounds bad enough but until you’ve experienced what it’s like to struggle for air it Is difficult if not impossible to understand.  One CF patient said, “It feels like you’re breathing through a small straw all the time.”

Difficult breathing alone is a terrible affliction but CF is much more than difficult breathing, it affects almost the entire body.   This definition from Medicine Net seems to sum up the disease in graphic, therefore understandable terms (http://www.medicinenet.com/cystic_fibrosis/article.htm).

“Cystic fibrosis mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs. Mucus is a substance made by the lining of some body tissues. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. However, if you have cystic fibrosis, your mucus becomes thick and sticky.

The mucus builds up in your lungs and blocks your airways—the tubes that carry air in and out of your lungs. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs.

The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can’t reach your small intestine.

These enzymes help break down the food that you eat. Without them, your intestines can’t fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave your body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort.

Cystic fibrosis also causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. This can upset the balance of minerals in your blood and cause a number of health problems. Examples include dehydration (a condition in which your body doesn’t have enough fluids), increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and, rarely, death.” The Clinical description of CF sounds bad enough but until you’ve experienced what it’s like to struggle for air it Is difficult if not impossible to understand.

The Cystic Fibrosis Foundation (www.cff.org/home/) Says this about the disease.

“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide.   An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races”.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.”

The sad fact of life for the approximately 30,000 Americans who suffer from cystic fibrosis (CF) is that they must get their chests pounded at least twice a day.

Chest pounding, also known as chest percussion, loosens the thick mucus that forms in the lungs of CF patients, allowing them to cough or sneeze up mucus and consequently breathe more easily. Chest pounding is a primary therapy for treating the disease.

To achieve chest percussion, CF patients today have two main choices: they can have a respiratory therapist perform the chest-pounding or they can purchase a CF “vest.” The vest, once the patient puts it on, uses air waves to shake the whole upper body, helping to loosen mucus in the lungs.

In this video a young woman not only demonstrates the vest but has some fun with it.  http://www.youtube.com/watch?v=NEBM7ediRic&feature=related

Symptoms of Cystic Fibrosis

From the Mayo Clinic

http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=symptoms

Respiratory signs and symptoms
The thick and sticky mucus associated with cystic fibrosis clogs the tubes that carry air in and out of your lungs. This can cause:

  • A persistent cough that produces thick spit (sputum) and mucus
  • Wheezing
  • Breathlessness
  • A decreased ability to exercise
  • Repeated lung infections
  • Inflamed nasal passages or a stuffy nose

Digestive signs and symptoms
The thick mucus can also block tubes that carry digestive enzymes from your pancreas to your small intestine. Without these digestive enzymes, your intestines can’t fully absorb the nutrients in the food you eat. The result is often:

  • Foul-smelling, greasy stools
  • Poor weight gain and growth
  • Intestinal blockage, particularly in newborns (meconium ileus)
  • Severe constipation

Frequent straining while passing stool can cause part of the rectum — the end of the large intestine — to protrude outside the anus (rectal prolapse). When this occurs in children, it may be a sign of cystic fibrosis. Parents should consult a physician knowledgeable about cystic fibrosis. Rectal prolapse in children may require surgery.

Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments and therapies, along with proper CF nutrition, can lengthen and improve the quality of life for those with CF.

Each day most people with CF:

  • Take pancreatic enzyme supplement capsules with every meal and      most snacks (even babies who are breastfeeding may need to take enzymes).
  • Take multi-vitamins.
  • Do some form of airway clearance at least once and sometimes up to four      or more times a day.
  • Take aerosolized      medicines—liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer.

Because CF is a complex disease that affects so many parts of the body, proper care requires specialized knowledge. The best place to receive that care is at one of the more than 110 nationwide CF Foundation-accredited care centers

Lung transplants

While lung transplants are an option for CF patients, the procedure will not cure the disease, because the defective gene that causes it is in all of the cells in the body, not just in the lungs. At this time, scientists are not able to “fix” genes permanently but they are working on it. . While a transplant does give a person with CF a new set of lungs, the rest of the cells in the body still have CF and may already be damaged by the disease. Further, organ rejection is always possible and drugs that help prevent organ rejection can cause other health problems.

Cost and available help

As is the case with most chronic diseases treating CF can become very expensive but there are programs that exist to help patients with these challenges.  Many people with CF use Cystic Fibrosis Services, Inc., a specialty pharmacy that is a subsidiary of the Cystic Fibrosis Foundation. It provides access to CF drugs, offers patient assistance programs and works to help resolve complex insurance issues. CF Services is a participating provider with more than 5,000 insurance plans and nearly 40 state and federally funded programs. Visit www.cfservicespharmacy.com or call (800) 541-4959.

In 2008, the CF Foundation launched the Cystic Fibrosis Patient Assistance Program (CFPAF) as a nonprofit subsidiary. The CFPAF helps people with CF (who qualify) who need FDA-approved medication or paired drug-delivery devices for the nebulized treatment of CF-related pulmonary disease, or an FDA-approved medication for the treatment of pancreatic insufficiency related to CF. Case managers at the CFPAF help people with CF with ways to reduce out-of-pocket costs for CF drugs. All funds distributed by the CFPAF are provided by grants from drug manufacturers. Visit http://www.cfpaf.org or call (888) 315-4154.

CF drug companies often offer a range of patient assistance programs — from giving out samples of new CF products, to providing free nutritional supplements, to accepting voucher payments for CF drugs. Find out more information in the Foundation’s archived Web cast entitled, ” Patient Advocacy: Issues and Answers for CF.”

Suggested resources

Cystic Fibrosis is a terrible disease and while progress is being made in treating it, lifespans for its victims are still relatively short.   If you’d like to help fund research or offer assistance in other ways contact the Cystic Fibrosis Foundation http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bristol Myers /Gilead Science — Profits Ahead of Life


I have a good news, bad news story to report today.  It is about a combination of life saving drugs that may never see the light of day because the two companies that make them can’t or won’t cooperate with one another.  One woman, Margaret Dudley of San Antonio Texas is doing something about it.  More about her, later.

This is about a combination of drugs from Bristol Myers Squib and Gilead Science that could be a cure for Hepatitis C which affects nearly 200 million people worldwide.  It is a viral infection that can lead to liver failure and death.  End-stage liver disease (cirrhosis) due to chronic hepatitis C has become the leading indication for liver transplantation in the United States.

First the good news, this really could be a cure.   A combination of Gilead’s GS-7977 and Daclatasvir from Bristol Myers Squib shows great promise as a cure according to some limited studies.  These drugs are pretty effective on their own but apparently when combined they could be a cure…yes cure.  I know, cure is pretty strong language in the medical world but it is the medical world that is using the term.

Now the bad news.  The two companies are not cooperating with one another, they can’t seem to agree on anything other than to disagree and in the meantime people are getting sicker and dying.  This is the classic battle over which company will make the most money when the two drugs are combined.

Here’s an Excerpt-The Street

Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients

“The new Hep C therapy at issue here combines Bristol’s Daclatasvir with Gilead’s GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular — an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting.

A 100% cure rate for genotype 1 patients! Obviously, results can’t get better than that.

You’d think there’d be a rush to move the combination regimen of Daclatasvir and GS-7977 into a larger, confirmatory phase III trial, but you’d be mistaken. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can’t work together.

Good luck understanding why Bristol and Gilead can’t come together to help Hep C patients. The companies can’t even agree on the fact that the two companies are not agreeing”.

This is an incredibly important story and one that needs wide circulation in hopes of forcing these two companies to cooperate for the sake of saving lives instead of who can provide the greatest return on investment.  As mentioned earlier, Hep C affects about 200 million people worldwide.

Typically, to become infected with hepatitis C virus, the blood of an infected person enters the body of someone who is not infected. The most common way involves sharing needles or other equipment used to inject drugs. This kind of Hepatitis C infection is in the news now because an infected healthcare worker at a hospital in New Hampshire used needles on himself then left them for others to use.  Thousands may have been infected as a result and that investigation continues.

It is also possible, but less likely to become infected with shared use of personal care items such as toothbrushes and razors. Infection is also possible through sexual contact. Hepatitis C is not spread by casual contact, kissing, coughing, sneezing, sharing utensils, or breastfeeding.

Other people with greater risk of infection include:

  • People with tattoos or body piercing done with non-sterile equipment.
  • People who received an organ transplant or blood transfusion before July 1992.
  • People with clotting problems who took blood products prior to 1987.
  • People receiving hemodialysis or who have a history of hemodialysis for kidney failure.
  • People with HIV infection.

Since July 1992, all blood and organ donations in the U.S. are screened for the hepatitis C virus. According to the CDC, the number of hepatitis C infections declined by 90% from 1994 to 2006, partially as a result of this.

A diagnosis of hepatitis C infection doesn’t necessarily mean you need treatment. If you have only slight liver abnormalities, you may not need treatment, because your risk of future liver problems is very low. Your doctor may recommend follow-up blood tests to monitor for liver problems.

Hep C symptoms may include:

  • Fatigue
  • Upset stomach and diminished appetite
  • Joint and muscle pain

Also, patients may experience symptoms related to liver cirrhosis, such as:

  • Jaundice, which is a yellowing of the skin and eyes
  • Urine being a dark yellow color
  • An increased tendency to bleed or bruise

Treatment of chronic hepatitis C varies depending on the individual. A person with chronic hepatitis C may not need or benefit from treatment. Some people may not be able to tolerate treatment because of side effects.

Currently, the FDA has approved the following treatments for hepatitis C:

  • Pegylated interferon alfa-2a
  • Pegylated interferon alfa-2b
  • Ribavirin
  • Standard interferon alfa
  • Incivek
  • Victrelis

Common side effects of interferons include fatigue, muscle pain, headache, nausea, vomiting, weight loss, and depression, and changes to your blood cell counts. Side effects of ribavirin include anemia, skin rash, fatigue, and nose/sinus congestion so a new treatment with minimal side effects and greater effectiveness would be cheered wildly.

Liver transplant
if your liver has been severely damaged, a liver transplant may be an option. During a liver transplant, the surgeon removes your damaged liver and replaces it with a healthy liver. Most transplanted livers come from deceased donors, though a small number come from living donors who donate a portion of their livers.

For people with hepatitis C infection, a liver transplant is not a cure. Treatment with antiviral medications usually continues after a liver transplant, since hepatitis C infection is likely to recur in the new liver.

Now to our hero 61 year old Margaret Dudley of San Antonio, Texas.  Margaret thinks this situation is intolerable and she has launched a petition drive to encourage the two companies to work together to save lives.

Last fall, she was tested for hepatitis C she believes she contracted from some earlier tattoos.  “I had no idea,” Dudley said. “I had no reason to think it would come back positive, but it did.”

Then she found out about Bristol Myers Squib and Gilead.  “That’s basically what me and millions of others have been waiting for,” Dudley commented.  We’re asking these companies put best patient health before profits.”

She has several thousand on her online petition so far and says public pressure may spark the pharmaceutical companies to keep going with clinical trials.  Dudley’s goal is to gather 100,000 signatures by July 28, 2012, which is World Hepatitis Day.  We encourage you to sign the petition.  Just go to: http://tinyurl.com/cow2uwt  We just can’t let profitability trump human life.

Some of the information in this blog was drawn from the following sources.

http://www.hcvadvocate.org/hcsp/articles/Shaw-Stiffel-1.html

http://tinyurl.com/d55az86

http://www.webmd.com/hepatitis/hepc-guide/chronic-hepatitis-c

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

A Life Needs Saving Right Now. Will You Help?


Most often I write about transplants that almost everyone has heard of like heart, lung, kidney, liver and pancreas.  Today is different though. This is about how a new discovery that removes then replaces  some of a patient’s adult stem cells back to the patient and stop, even reverse the effects of Multiple Sclerosis (MS).  Studies indicate this is an amazing breakthrough.  The same procedure is being studied for use with other diseases as well.

This blog is about Emily Lori Cameron a cancer survivor who now has Multiple Sclerosis (MS) which presents her with new challenges every day.  Each day she asks herself, “Will I be able to speak clearly, will my thoughts be clear, will I be able to walk, use my hands or even know where I am and what I am doing?”   Medicare has approved a new procedure for Lori but she must raise $42,000 to pay her share of the cost.  More about that in a bit but first a little about MS.

Multiple Sclerosis is a terrible disease.  In effect the immune system attacks the protective lining around nerves, shreds it and causes communication between brain, nerves and body to become tangled and ineffective.   For example, the brain might send a message to the legs to begin walking but along the way the message gets garbled and what the legs receive is a command to relax so you fall down.  Up until the last couple of years  standard treatment which includes drugs and some physical therapy only delays the inevitable. It does not stop the progression of the disease so it certainly can’t reverse it.

Now there is a new procedure that uses one’s own adult stem cells to not only stop the disease in its tracks but to even reverse many of the existing symptoms.   This new procedure is approved by Medicare and initial studies have indicated that it is very effective, some have even called it a cure for Multiple Sclerosis.   I can’t tell you exactly how this works but apparently they will withdraw from Lori a certain amount of her adult stem cells and store them for a short while. Then she will undergo chemotherapy that will destroy the old immune system. When that is done the original adult stem cells withdrawn from Lori’s body will be injected into her again to create a new uncontaminated immune system. Initial studies indicate success rates in the high 90 percent range. Here’s a link to tell you more http://www.northwestern.edu/newscenter/stories/2009/01/burtms.html

So far the new treatment is approved for use in the early stages of MS so it is entirely possible that if Lori’s condition gets considerably worse, which is entirely possible, she could be removed from the approved list.  Lori’s sister has already experienced the treatment and is doing wonderfully well.  There is an urgency to Lori’s condition because we must, must, must raise the money as soon as possible so there is no chance she will be removed from the transplant list.

Just today I posted a new video on YouTube, it’s only 9 minutes long and effectively tells Lori’s story and why your donation is so critical and must be done so quickly.  You can find it at http://www.youtube.com/watch?v=KrBJoCdIKto.  Or to be even faster you can just go directly to the highly respected National Transplant Assistance Fund (NTAF) and donate directly.  Lori has been approved by NTAF and is registered there www.ntafund.org/contribute/ Secure credit card: 800-642-8399.   You can look her up under the name Emily Lori.

This is probably the most urgent appeal I have ever made.  Lori is a nurse and a very compassionate human being.  She has sacrificed a great deal in order to help others, never asking for anything for herself but now the situation is becoming desperate.  We simply must raise $42,000.  That’s a lot of money but when that’s all it takes to save a human life it should not be an insurmountable obstacle.  Please dig deep…forsake the Latte for a few days, or a beer, or a pack of cigarettes or that sweater you really wnted and send the money to Lori instead.  If we can do that Lori will have the financial support she needs very quickly.  Can you stand by and watch someone die?  I think not…send what you can 50 cents, a dollar, ten dollars…all of it will add up and we can save this precious human life.

Please view another of our recent videos, “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use. 

Also…there  is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook grou[, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

Please  comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and love.

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