Thursday, May 03, 2007
Paying for your life
Every year, around 6,000 people learn they have ALS or Lou Gehrig's disease. That may seem like a small number, unless of course you are one of those people, or love one of those people. It is an awful disease that robs people of strength in their extremities and then relentlessly marches toward the center of the body, eventually causing paralysis of the throat muscles and diaphragm. There is no cure, and once diagnosed, people are essentially handed a death sentence.

Unfortunately, there has been little progress made in the treatment of this disease. Many believe that is because there are few incentives to investigate and develop medications, because of the small number of potential beneficiaries. Unlike other neurodegenerative problems, such as MS, there are fewer clinical trials for ALS, and investigators have greater difficulty securing funding. That could be why so many more advances have been made with MS. To be fair, ALS is considered an "orphan disease," and because of that there are some federal incentives to reduce the cost of drug development. Many researchers, though, say it is not enough.

This morning, we told the story of an investigator who decided to get creative. He went to his own patients and suggested that they pay to be a part of a clinical trial. He didn't require payment, but he explained that the trial was in jeopardy without more money. We followed one patient who gave $4,500 and another patient who thought it was wrong to pay and gave nothing. Both say that ultimately, they were treated fairly and even had some benefit from the medications.

It does raise a larger issue. Should patients with a terminal diagnosis be asked to pay to participate in a clinical trial or is that ethically questionable? Should we as a society do more to support funding for rare diseases, such as ALS? What are your thoughts?
I think accepting donations for a study is acceptable. However patients should never be presured to pay for the study, and it should be made clear that payment will in no way affect their treatment. Going even further, there could be a sign saying that donations are accepted, rather than asking the patient directly, as in som settings even the most harmless of requests can feel like pressure (think of The last time an envelope with names was passed around your workplace).
If these patients chose to pay, and a solution was found to help them would they or their families get a cut of the profit of the sell of the drug? I doubt it...the only way this paying for your own clinical trial should be done is if they get to benefit from the potential sale of the product.
I would assume that anyone with a terminal illness that is offered a chance at recovery for the cost of support would do all they could to secure that support. It cannot be unethical to provide patients with the knowledge that there are programs they could fund that could help their condition. Being so closely tied to the progress of these programs I would think that sufferers from these disorders would be the most adamant and generous supporters.
My uncle died from Lou Gehrig's disease about 2 years ago. It's listed as one of my reasons for wanting to go to medical school on my med school application. Lou Gehrig's disease is an ugly painful way to die. If I ever get that disease, I think I'd rather just be shot in the head, but if I did find out I had the disease and I could be a part of a study that could help treat or cure it, I would defiantly want to do it. My uncle wanted to be part of treatment studies. The real painful question about this disease is, should assisted suicide become legal for people who suffer from this? Most of these patients would rather die than to became a financial burden and put so much strain on their families. Many patients just think a quick death is better.
I think that a person with a serious disease should pay the amount equivalent to what he would pay for regular care for the same disease. I don't think they should pay the extra for experimental drugs, but the insurance comapnies also, should pick up part of the cost, equivalent to regular care.
I feel that in this case it was acceptable for the patients to pay, since there was seemingly no alternative. However, insurance companies should foot the bill for ALS just as they would for any other disease. After all, if it is a small population, then it should not hurt the insurance companies that much.
They should not pay. I am not ill and hope not to become so. We who are fortunate enough to have our health should celebrate by giving of our time and our money.
This is a very tricky issue. On the one hand, researchers could be tempted to fund their research by 'peddling hope' to very sick individuals and their families. I sympathize with ethicists and others who rightly warn about this possibility and point out the added pressure that this opportunity could exert on seriously ill individuals and especially on those who are financially compromised.
On the other hand, ALS patients have few alternatives and may greatly benefit from taking such an active role in their own treatment, regardless of its ultimately therapeutic effect. And its not as though the majority of these patients aren't already paying large out-of-pocket expenses for their non-curative medical treatments.

To prohibit a patient's opportunity to simultaneously participate in & fund medical research is unnecessary and paternalistic if the patient is an adult, IRB safeguards are in place, and informed consent is firmly established. It is regrettable, however, to know that viable medical research initiatives are so underfunded that they are forced to panhandle in this manner.
Sufferers of rare diseases in clinical trials should not pay for their own participation. In some cases, the hospital and physicians are paid to participate in clinical trials for common diseases. The employees who perform the work and the patients are not paid for their efforts. Perhaps the payments to the hospitals and physicians for drug trials on common diseases should be redirected towards enabling clinical trials on rare diseases.
I HIGHLY COMMEND Dr. Bennett for advising the trial participants that an urgent need for funding was necessary. UVA is fortunate to have a scientist of his high caliber and compassion.

This approach was far more ethical than advising the participants that the only hope they had was diminished due to lack of funding from other sources. This happened in the original trial, resulting in a lapse of over a year before it restarted. During this lapse of time, MOST of the original participants died or their disease progressed too much to benefit from the trial when it was restarted with new funding.

I am the spouse of one of the trial participants who had the honor and resources to donate to this trial. My sincere hope is that this story will lead to private donations from people who are criticizing the need for ALS patients to contribute and others who wish to help fund this potentially promising research to find a cure for this devastating fatal disease which usually completely paralyzes and kills its victims in 2-5 years from diagnosis. These patients don't have the luxury of time to wait many years for a cure.

Most families know someone who has had this disease, as it randomly can affect anyone as young as 20. It is time to HELP FUND THIS IMPORTANT RESEARCH.

If you are willing to make a tax deductible contribution to this extremely worthy cause to help current and future ALS patients and their families, please make your check payable to:

UVA Rector and Visitors - ALS Drug Trial and mail to:

Dept. of Neurology-ALS
Health System Development Office
University of Virginia
P. O. Box 800773
Charlottesville, VA 22907-3015

Any size donation can help and would be appreciated, so you don't need to be wealthy to help. However, if you have the resources to send a large donation, you can have an impact on sustaining this essential research to KEEP HOPE ALIVE FOR THE ALS COMMUNITY.

Due to Government budget cutbacks for health research, no Government grants have been awarded and non are pending.

The ALS Community is depending upon YOU to help make a difference, so you and your family may not have to worry about being affected by this terminal devastating disease in YOUR FAMILY'S future. What a great legacy to which you can contribute NOW!!!

Thank you in advance for any size contribution you can make!! Please ask your friends, co-workers, and relatives to help also.
After surviving a car accident I've yet to find a general consensus amougst the variety of experts treating me. One thinks I'm a candidate for ALS another for MS, etc...(and yes I do have symptoms relating to both)

Though they all agree that the protusions in my neck area and bulging disc revealed on my MRI and the Lateral deviation in my lower spine have little if nothing to do with my serious symptoms and do not relate these diseases back to the auto accident.

I can't help but to wonder if we're missing the boat concerning the delicate nature of spinal tissue and losing out on the possible early intervention regarding often fatal neurological diseases.
I am the wife of Lee Hollett, one of the ALS participants featured in your story. We donated to the trial without being asked and DON'T feel it is unethical. We feel that it would have been unethical for the trial to stop due to lack of funding without giving us and others the opportunity to help the trial continue.

The title of this story should not be "Paying for your Life", as there are no guarantees in drug trials. A more appropriate title would have been: "MORE PRIVATE FUNDING NEEDED FOR UVA'S ALS CLINICAL TRIAL". This is the message that needs to be delivered to your audience to give the private sector the opportunity to DONATE. The public sector is not giving any financial grants to this research due to budget reductions.

If you do a follow-up story, we would appreciate the title & message being changed, so this story can bring positive results to continue this trial as long as possible. It should not be an ethical debate, as that doesn't help medical science accomplish anything. It should be a REQUEST FOR PRIVATE DONATIONS from anyone who wishes to help this potentially promising trial by a dedicated ALS researcher, Dr. James Bennett, who has no financial interest in this trial.

Thank you.

Diana Hollett
Definition of Irony / Part of 08 Defense Budget
ALS Therapy Development Foundation, Cambridge, MASSACHUSETTS
This appropriation funds research for development of effective treatments for amyotrophic lateral sclerosis (ALS).
http://www.als.net/

William B. Bigge (Bill); Born 07/17/35 - Died 06/05/07
Bill was the Senior Manager of Bigge Defense and devoted the past several years to a project intended to protect our troops from the harmful effects of IEDs.
A former Marine, physicist & engineer, Father of five, Grandfather of five, devoted husband, athlete and contributing community member of Venice Florida.
Diagnosed with ALS at 69, but continued to do volunteer work, community planning, religiously active and worked right up to the hour of his death.
He will be deeply missed and his wish to continue the project will carry on.

Semper Fi
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