Nobody grows up obsessed with the idea of getting a mobility scooter or a wheelchair. They are not on anyone’s wish list unless your physical mobility is limited. While these means of transportation offer disabled people a new sense of freedom, they also bring some new and unexpected realities to life.
This blog is primarily about how to select a mobility scooter and how to determine if Medicare will pay for it. At some future date I might focus on other issues important to the disabled.
You will likely find that my emphasis is on scooters and that’s only because they the most common and least expensive way to get from one place to another if walking is not an option. Also, I am a mobility scooter user. We may address motorized wheelchairs specifically later. There are, though, some commonalities both share. One thing is certain. Your life is in for some big changes once you accept the keys to your new ride.
Scooter or wheelchair? That’s probably not a decision you will have to make, your physical condition may dictate what will work best for you, Disabled World offers this explanation. (http://tinyurl.com/b4gxgl)
Issues to Consider when Buying a Mobility Vehicle:
- Electric wheelchairs tend to be far more expensive than mobility scooters
- If you need to transport your personal mobility vehicle, a compact mobility scooter can be folded up to fit in a trunk or a back seat. Alternately, you can carry them behind a car with a trailer. Most electric wheelchairs do not fold and are too heavy for a simple trailer.
- If you have a wheelchair-modified van, it is easier and safer to tie down an electric wheelchair than a mobility scooter
- An electric medical scooter is steered with bicycle-like handlebars, whereas electric wheelchairs use a joystick. If you have issues with upper body mobility, a wheelchair might be easier to control.
- If you have posture issues, a wheelchair usually offers more features and support to help you, including motorized stand, tilt, and recline options.
- If you need to stay in your mobility aid for most of the day, a wheelchair is usually more comfortable.
The right choice of a personal mobility vehicle depends on how you are planning to use it.
- Are tight corners an issue?
- Would you like to fully enjoy the great outdoors, or are you more interested in shopping?
- Will you be running local errands, using public transportation, or using your own vehicle to move your personal mobility vehicle?
Once you answer these questions, you will be able to make the right choice for your specific situation.
I am the owner of two mobility scooters because I have COPD and can’t walk very far. One of the scooters is for outside the home and the other is for venues that offer flat, even surfaces upon which I can ride. Both of my scooters were paid for privately, no government funds were applied for or offered. If you want every minute detail about the process of acquiring mobility vehicles go to https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html If a summary will satisfy you read on.
Let’s start with the most common question. “Will Medicare pay for my wheelchair or mobility scooter?” That single question is the cause of a lot of confusion, because the answer is, “Maybe.”
There are many suppliers who will tell you that Medicare will pay and you may even hear it from trusted friends. Here’s the truth. Medicare will pay up to 80% of the cost of an “approved” scooter or wheelchair if the supplier accepts Medicare assignment. That means they have to agree in writing that they will accept what Medicare will pay and you can be billed for no more than 20 percent of the total. If the supplier does not accept Medicare assignment Medicare will still pay the standard amount, but the supplier can send you a bill for any amount they choose.
So, back to the answer. For Medicare to pay for a manual (unpowered) wheelchair, a senior must have a condition which prevents them from moving around in their home as they go about daily living. Their disability cannot be resolved through the use of a cane or walker and the wheelchair cannot be necessary only for use outside the home.
For Medicare to pay for an electric or powered wheelchair or scooter the individual must have the same needs as for a manual wheelchair but they must prove they do not have the physical strength to operate it. In addition they must demonstrate they have the ability to control the powered device without hurting themselves or those around them. Key point
here. You have to show that you need it to get around in your home and that your home is barrier free.
In either case, getting Medicare to pay is not an easy task. A written order from a doctor is necessary which must state the medical reason for the need and the type of wheelchair which is required. Be very careful. Medicare fraud is rampant and usually committed by suppliers or others who sell the goods, services, medicine and medical equipment that seniors need.
Recently I met a man my age who had a scooter identical to mine. I asked how he liked it and he told me that not only was it a great scooter but that Medicare had paid for it. Now I know better than that so I asked how that worked and he explained that with the help of his scooter supplier he found a physician who provided the medical certification he needed. Beware – if any supplier has a list of Doctors you can see who will approve your purchase it is likely you will get one fraudulently.
The Medicare website says this about getting started on the road to acquiring a scooter or wheelchair. http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&script_id=189
“Before you get your wheelchair or scooter, you must have an office visit with your doctor. The visit should take place no more than 45 days before the DME (Durable Medical Equipment) order and should deal with the medical reasons you need the wheelchair or scooter.
Your provider must sign an order or fill out a prescription or certificate that states that you need the power wheelchair or scooter to function in the home. The order must state:
Your health makes it very hard to move around in your home even with the help of a walker or cane;
- You have significant problems in your home performing activities of daily living such as getting to the toilet, getting in and out of a bed or a chair, bathing, and dressing;
- If you need a power wheelchair, you cannot use a manual wheelchair or scooter, but you can safely use a power wheelchair and
- The required office visit with your doctor took place.
The equipment must be necessary for you in the home but you can also use it outside the home. You can get only one piece of equipment to address your at-home mobility problem. Your doctor or other provider will determine what equipment you need based on your condition, what equipment can be used in your home, and what equipment you are able to use.”
Now some other scooter issues.
As we mentioned the scooter has to first be approved for use in your home. If that has been done then you must consider where else you might use it. Medicare might give you some leeway in your choice of vehicles, but not much and if they do and you choose one with all the bells and whistles you could wind up with a hefty bill.
Outside the home, here’s what you should consider.
- How will you transport it? Assuming you might want to pack it into the back of the mini-van how will you do that? Your scooter will have to be transportable, that means lightweight and easy to disassemble and assemble unless you can afford a power ramp on the back of your vehicle, one onto which you can drive so there’s no lifting or disassembling involved.
- How much clearance is there between the bottom of the scooter and the road below? My bigger scooter has a little over 5 inches. The new, smaller one has but 2.5. That means if you get into an area without curb cuts you will be unable to use sidewalks and take my word for it, the streets are no place for scooters or wheelchairs. They are much too slow and often invisible to drivers of cars and trucks. Smaller scooters with low clearance can get stopped by ruts, bumps and uneven surfaces very easily and if you are alone, what do you do?
- Lighting. Most scooters and wheelchairs don’t come with it. Buy a headlight and taillight anyway, you never know when you will be caught out after dark and a scooter or wheelchair without lights is an accident waiting to happen. Some mobility vehicles don’t even come with reflectors, buy a couple of those as well.
- Safety flag. You should also purchase a safety flag that stands about 4 or 5 feet high from the back of your vehicle. It will help both drivers and pedestrians see you coming and add some safety insurance.
- A basket. Most come with a basket, but if not get one. You will need somewhere to put your “Stuff.” You can even buy drink holders that snap on to your armrests.
- Because I drive my scooter to the supermarket about a mile away a couple of times a week I drive though areas where homes are being remodeled or built and where other construction work is done. I had several flat tires until I went to a local bicycle shop to have solid rubber tires installed. No more flats. Some will tell you that solid rubber tires offer a much bumpier ride, but the fact is that scooters and wheelchairs ride like skate boards anyway. Get the solid rubber. If you are a purist and insist on pneumatic tires, get a patch kit and a tire pump and keep it in the basket of your scooter because you will need it.
- Cane holder. If you use a cane you’ll need a holder. The maker of your vehicle probably has them as an accessory or they might even include one at no extra charge.
- Rear View Mirror. It may sound silly but consider this, you are driving and you need to know what’s in back of you as well as what’s ahead. Rear view mirrors will come in quite handy. You will realize how important they are when you back into someone for the first time.
- Batteries. How far will they take you, how long will they last and do they come with a charger?
- Capacity. How much weight will it safely transport?
- Test drive. Ask to take it somewhere out of the showroom…around the block, into a mall, somewhere where you can get the “feel” of the scooter.
Those are the basics. I know I have only scratched the surface, but perhaps you will find something useful here anyway. You can add to the list once you have become an experienced mobility vehicle driver – and – you will add to the list. I purposely did not get into Scooter/Wheelchair brands and suppliers. Just Google Mobility scooters/wheelchairs and you will get all the information you need. There are also several Internet forums you can join to chat with other users about their experiences.
Finally, this word. There have been admirable attempts at making the world more accessible, but they are too few and still too rare. In many buildings you will find stairways and no ramps. Disabled parking is often abused by those who don’t need it. Mobility carts in supermarkets and other businesses are wonderful, if you can get one. Again, too many people who don’t need them, ride them. Even the sidewalks can be problematic when cars parked in driveways overlap and block the sidewalk, forcing scooters and wheelchairs into the street. And, most importantly those of us who are disabled are simply not seen. I can’t tell you how many times people are looking over my head as they walk right into my scooter.
Elevators also present a problem. If I can get my scooter in all the way to the back of the elevator before anyone enters there is usually room for several more people and often they will stand back and allow me to do that. On other occasions, though, the crowd surges around me, packs the elevator and then as the door is closing they will look surprised when they see there is no room for me even though I was there first.
Anyone who has a mobility vehicle will have their own stories to tell. None of us want special treatment we only want to be noticed and considered. And, oh, there is one more item. Don’t be surprised when while on your scooter in the company of your significant other a clerk or salesperson will address them not you. For example it is not uncommon for a clerk who would like me to get up to look at something to say to my wife, “Can he walk?” She often says, “Yes, and he hears and talks, too.”
So, the next time you see a disabled person think for just a moment about what it must be like to be unable to walk very far if at all and how riding a scooter or wheelchair presents a whole new set of barriers. A little consideration goes a very long way.
I have written two other blogs on mobility vehicles here on Bob’s Newheart. You can find them by clicking on these links.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 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 firstname.lastname@example.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 at http://www.donatelife.net. It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.
When you have a serious illness you want relief and most often it does not come quickly or simply. The proper practice of medicine is measured, deliberate and often slow. Medical experts depend on established scientific protocols to determine the effectiveness of treatments. Because the mass media offer the same advertising and promotional opportunities to everyone it is often difficult to determine which ads are legitimate and which are not. This blog aims to help you decide.
While there is no shortage of local, state and federal agencies who seek to protect consumers from scams, fraud and quackery there is no way that every offer made in the media, on the phone and through the internet can be monitored. Your protection depends for the most part of your being alert to scams and can recognize offers that are without merit. There is no shortage of frauds and crooks who scheme daily to find new ways to get you to part with your money. That means you must do everything possible to protect yourself.
The U.S. Food and Drug Administration (FDA) has broad responsibilities in its role as a consumer protection agency. Here is just a part of what FDA is mandated to do:
“FDA is responsible for protecting the public health by assuring the safety, efficacy and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation.
FDA is also responsible for advancing the public health by helping to speed innovations that make medicines more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medicines and foods to maintain and improve their health.”
You can read more of the FDA’s mission here http://www.fda.gov/aboutfda/whatwedo/
Exposing fraud is but one aspect of the FDA’s role and there is no shortage of fraudulent claims being made. You can find more by clicking on this link.: http://www.fda.gov/forconsumers/protectyourself/healthfraud/default.htm Often companies make health claims about their products that not only are not true but can cause great harm, even death. Here’s just one example of a medical claim deemed dangerous enough by the FDA to issue a public warning (I have edited the warning. For the official language go to http://tinyurl.com/m2u8s7b)
Public Notification: Pro ArthMax Contains Several Hidden Drug Ingredients
[1-15-2014] The Food and Drug Administration (FDA) is advising consumers not to purchase or use Pro ArthMax, a product promoted and sold as a dietary supplement for joint, muscle and arthritic pain.
FDA laboratory analysis confirmed that Pro ArthMax contains the active ingredients diclofenac, ibuprofen, naproxen, indomethacin, nefopam, and chlorzoxazone.
- Diclofenac, ibuprofen, naproxen, and indomethacin are NSAIDs which may cause increased risk of heart attack and stroke, as well as serious gastrointestinal damage including bleeding, ulceration, and fatal perforation of the stomach and intestines.
- Chlorzoxazone is a muscle relaxant that is only available by prescription. Chlorzoxazone may cause drowsiness, dizziness, and lightheadedness, which may impair the ability to perform certain tasks, such as driving a motor vehicle or operating machinery.
- Nefopam is a non-narcotic pain relieving drug that is not approved for marketing in the U.S. is not FDA-approved and its safety or efficacy has not been established.
Consumers should stop using this product immediately and throw it away. Consumers should consult a health care professional as soon as possible if they have experienced any negative side effects, such as unusually dark stools or urine, stomach pain, increased bruising, other signs of bleeding, confusion, sedation, hallucinations, and seizures.
Health care professionals and patients are encouraged to report adverse events or side effects related to the use of this product to the FDA’s MedWatch Safety Information and Adverse Event Reporting Program:
Contact FDA Toll Free (855) 543-3784, or (301) 796-3400 email@example.com
How to Recognize a Scam
QuackWatch is a website run by a couple of physicians who keep an eye out for phony medical claims. One such claim is that we all suffer from some sort of vitamin deficiency. Stephen Barrett, M.D. and Victor Herbert, M.D., J.D. are pretty astute and have developed a list of 26 Ways to Spot Quacks and Vitamin Pushers. I will list only a few here. You can find the rest on their website. http://www.quackwatch.com/
They Claim That Most Americans Are Poorly Nourished
This is an appeal to fear that is not only untrue, but ignores the fact that the main forms of bad nourishment in the United States are obesity in the population at large (particularly the poor) and undernourishment among the poverty-stricken. Poor people can ill afford to waste money on unnecessary vitamin pills. Their food money should be spent on nourishing food.
It is falsely alleged that Americans are so addicted to “junk” foods that an adequate diet is exceptional rather than usual. While it is true that some snack foods are mainly “naked calories” (sugars and/or fats without other nutrients), it is not necessary for every morsel of food we eat to be loaded with nutrients. In fact, no normal person following the Dietary Guidelines for Americans is in any danger of vitamin deficiency.
They Say That Most Diseases Are Due to Faulty Diet
and Can Be Treated with “Nutritional” Methods.
This simply isn’t so. Consult your doctor or any recognized textbook of medicine. They will tell you that although diet is a factor in some diseases (most notably coronary heart disease), most diseases have little or nothing to do with diet. Common symptoms like malaise (feeling poorly), fatigue, lack of pep, aches (including headaches) or pains, insomnia, and similar complaints are usually the body’s reaction to emotional stress. The persistence of such symptoms is a signal to see a doctor to be evaluated for possible physical illness. It is not a reason to take vitamin pills
They Suggest That a Questionnaire Can Be Used
to Indicate Whether You Need Dietary Supplements.
No questionnaire can do this. A few entrepreneurs have devised lengthy computer-scored questionnaires with questions about symptoms that could be present if a vitamin deficiency exists. But such symptoms occur much more frequently in conditions unrelated to nutrition. Even when a deficiency actually exists, the tests don’t provide enough information to discover the cause so that suitable treatment can be recommended. That requires a physical examination and appropriate laboratory tests. Many responsible nutritionists use a computer to help evaluate their clients’ diet. But this is done to make dietary recommendations, such as reducing fat content or increasing fiber content. Supplements are seldom necessary unless the person is unable (or unwilling) to consume an adequate diet.
They Use Anecdotes and Testimonials to Support Their Claims.
Establishing medical truths requires careful and repeated investigation—with well-designed experiments, not reports of coincidences misperceived as cause-and-effect. That’s why testimonial evidence is forbidden in scientific articles, is usually inadmissible in court, and is not used to evaluate whether or not drugs should be legally marketable. (Imagine what would happen if the FDA decided that clinical trials were too expensive and therefore drug approval would be based on testimonial letters or interviews with a few patients.)
They Claim They Are Being Persecuted by Orthodox Medicine
and That Their Work Is Being Suppressed Because It’s Controversial.
The “conspiracy charge” is an attempt to gain sympathy by portraying the quack as an “underdog.” Quacks typically claim that the American Medical Association is against them because their cures would cut into the incomes that doctors make by keeping people sick. Don’t fall for such nonsense! Reputable physicians are plenty busy. Moreover, many doctors engaged in prepaid health plans, group practice, full-time teaching, and government service receive the same salary whether or not their patients are sick—so keeping their patients healthy reduces their workload, not their income.
There is not a single area of healthcare that has not been scammed by crooks. Consumers must continually keep their guard up. Because prescription drugs can be costly many people turn to on-line pharmacies who offer huge discounts for what they say is the same medicine but sometimes under a different name. Again…buyer beware.
ScamWatch is an Australian organization that provides excellent advice. They offer these tips to avoid wasting your money on offers that are, “Too good to be true.” I have edited their material. For more and complete information go to http://www.scamwatch.gov.au/content/index.phtml/tag/Scamwatch/
Miracle cure scams?
Miracle cure scams cover a whole range of products and services which can appear to be legitimate alternative medicine. They cover health treatments for all kinds of medical conditions from cancer and AIDS to arthritis and colds. Miracle cure scams usually promise quick and easy remedies for serious medical conditions.
Miracle cure scams are particularly nasty because they usually increase health and emotional stress, they are costly, and they can be dangerous if they prevent you from seeking expert medical advice. They exploit people’s hopes for improved health and end up causing more problems for people who already have enough to deal with.
- The treatment claims to be effective against a very wide range of ailments.
- The miracle cure is suggested after a condition is diagnosed using a questionnaire (often on the internet).
- The product is sold through unconventional means. For example, it might be sold over the internet, by unqualified individuals, through mail order ads, or on television infomercials.
- The product relies on some guru figure, or a certain ingredient that is claimed to have mystical properties.
- There is no scientific evidence to back up the claim that the miracle cure actually works.
- Miracle cures usually include anonymous testimonials, for example ‘Luke, from
Do your homework
You should seek independent medical advice from your doctor or other qualified health care professional about the miracle cure to see if it is safe and suitable for you. Remember that a legitimate diagnosis cannot be made by someone who is not qualified or has not seen you. Do not rely solely on information you find on the internet.
If you are interested in the product, find out if there are any published medical or research papers to back up the claims. Make sure you know the full cost of the product or service, and if there is a genuine money back guarantee.
Senior Citizens are Targets of Scammers and Quacks
As a senior citizen myself I see the scams and phony offers on a daily basis. They come by email, snailmail, telephone and internet “News” flashes. The best advice we can give is this. If you don’t know the people who are making a claim, dismiss them and seek advice from someone you trust.
Here are some of the top scams that target senior citizens
http://www.ncoa.org/enhance-economic-security/economic-security-Initiative/savvy-saving-seniors/top-10-scams-targeting.html (again, I have edited the material for the complete report click on the above link)
Financial scams targeting seniors have become so prevalent that they’re now considered “the crime of the 21st century.” Over 90% of all reported elder abuse is committed by an older person’s own family members, most often their adult children, followed by grandchildren, nieces and nephews, and others.
Financial scams also often go unreported or can be difficult to prosecute, so they’re considered a “low-risk” crime. However, they’re devastating to many older adults and can leave them in a very vulnerable position with little time to recoup their losses.
Some ways to identify scams
Every U.S. citizen or permanent resident over age 65 qualifies for Medicare, so there is rarely any need for a scam artist to research what private health insurance company older people have in order to scam them out of some money.
In these types of scams, perpetrators may pose as a Medicare representative to get older people to give them their personal information, or they will provide bogus services for elderly people at makeshift mobile clinics, then use the personal information they provide to bill Medicare and pocket the money.
Counterfeit Prescription Drugs
Most commonly, counterfeit drug scams operate on the Internet, where seniors increasingly go to find better prices on specialized medications.
The danger is that besides paying money for something that will not help a person’s medical condition, victims may purchase unsafe substances that can inflict even more harm. This scam can be as hard on the body as it is on the wallet.
Funeral & Cemetery Scams
In one approach, scammers read obituaries and call or attend the funeral service of a complete stranger to take advantage of the grieving widow or widower. Claiming the deceased had an outstanding debt with them, scammers will try to extort money from relatives to settle the fake debts.
Another tactic of disreputable funeral homes is to capitalize on family members’ unfamiliarity with the considerable cost of funeral services to add unnecessary charges to the bill.
In one common scam of this type, funeral directors will insist that a casket, usually one of the most expensive parts of funeral services, is necessary even when performing a direct cremation, which can be accomplished with a cardboard casket rather than an expensive display or burial casket.
Fraudulent Anti-Aging Products
In a society bombarded with images of the young and beautiful, it’s not surprising that some older people feel the need to conceal their age in order to participate more fully in social circles and the workplace.
Whether it’s fake Botox like the one in Arizona that netted its distributors (who were convicted and jailed in 2006) $1.5 million in barely a year, or completely bogus homeopathic remedies that do absolutely nothing, there is money in the anti-aging business.
Botox scams are particularly unsettling, as renegade labs creating versions of the real thing may still be working with the root ingredient, botulism neurotoxin, which is one of the most toxic substances known to science. A bad batch can have health consequences far beyond wrinkles or drooping neck muscles.
Examples of telemarketing fraud include:
“The Pigeon Drop”
The con artist tells the individual that he/she has found a large sum of money and is willing to split it if the person will make a “good faith” payment by withdrawing funds from his/her bank account. Often, a second con artist is involved, posing as a lawyer, banker, or some other trustworthy stranger.
“The Fake Accident Ploy”
The con artist gets the victim to wire or send money on the pretext that the person’s child or another relative is in the hospital and needs the money.
Money is solicited for fake charities. This often occurs after natural disasters.
Because many seniors find themselves planning for retirement and managing their savings once they finish working, a number of investment schemes have been targeted at seniors looking to safeguard their cash for their later years.
From pyramid schemes like Bernie Madoff’s (which counted a number of senior citizens among its victims) to fables of a Nigerian prince looking for a partner to claim inheritance money to complex financial products that many economists don’t even understand, investment schemes have long been a successful way to take advantage of older people.
Homeowner/Reverse Mortgage Scams
The reverse mortgage scam has mushroomed in recent years. With legitimate reverse mortgages increasing in frequency more than 1,300% between 1999 and 2008, scammers are taking advantage of this new popularity.
As opposed to official refinancing schemes, however, unsecured reverse mortgages can lead property owners to lose their homes when the perpetrators offer money or a free house somewhere else in exchange for the title to the property.
Sweepstakes & Lottery Scams
This simple scam is one that many are familiar with, and it capitalizes on the notion that “there’s no such thing as a free lunch.”
Here, scammers inform their mark that they have won a lottery or sweepstakes of some kind and need to make some sort of payment to unlock the supposed prize. Often, seniors will be sent a check that they can deposit in their bank account, knowing that while it shows up in their account immediately, it will take a few days before the (fake) check is rejected.
During that time, the criminals will quickly collect money for supposed fees or taxes on the prize, which they pocket while the victim has the “prize money” removed from his or her account as soon as the check bounces.
The Grandparent Scam
Scammers will place a call to an older person and when the mark picks up, they will say something along the lines of: “Hi Grandma, do you know who this is?” When the unsuspecting grandparent guesses the name of the grandchild the scammer most sounds like, the scammer has established a fake identity without having done a lick of background research.
Once “in,” the fake grandchild will usually ask for money to solve some unexpected financial problem (overdue rent, payment for car repairs, etc.), to be paid via Western Union or MoneyGram, which don’t always require identification to collect.
At the same time, the scam artist will beg the grandparent “please don’t tell my parents, they would kill me.”
While the sums from such a scam are likely to be in the hundreds, the very fact that no research is needed makes this a scam that can be perpetrated over and over at very little cost to the scammer.
Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients. He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy.
Bob is a former journalist, Governor’s Communication Director and international communications consultant.
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.
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. .
- The National Institutes of Health Web site www.nih.gov
- National Academies/National Academy of Sciences www.nas.edu/stemcells
- Harvard Stem Cell Institute www.hsci.harvard.edu
- University of California-San Diego Stem Cell Initiative http://stemcells.ucsd.edu,
- National Bone Marrow Program www.marrow.org
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.
- Medical news today. www.stemcellresearchnews.com
- Science Daily at www.sciencedaily.com/news/health_medicine/stemcells
- Stem cell Research News www.stemcellresearchnews.com
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 firstname.lastname@example.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 email@example.com 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.