Coping With an Unprofitable Cure

[Guest guest]

Coping With an Unprofitable Cure

PUBLISHED MAY 1, 2004

I am a Columbia undergrad with Multiple Sclerosis. You wouldn't

recognize me as someone with MS, because I look just like you. I

don't have a wheelchair or a cane, and I keep my diagnosis a secret

(and am writing this article anonymously) in order to improve my

chances of being employed after I finish school. In fact, you and I

were probably similar in a lot of ways up until nine months ago, when

I was diagnosed and put on a $10,000 per year designer drug that I

inject every other day with the hope of slowing the progress of my

condition.

I know it's not pleasant to think about what your life would be like

if what happened to me had happened to you. Probably, like me, you

would be very angry. Some of this anger is irrational and useless,

focused on people who are just plain luckier than me. But some of it

is very justified, and it has to do with research and support

institutions that are not doing everything they can to find a cure.

MS is a chronic illness--that means you have it all your life--which

affects the nervous system. The illness is poorly understood, but we

do know that scars develop on the brain and/or spine of MS sufferers,

and that the insulating material that surrounds their neurons

deteriorates, making it much harder for the nervous system to move

information around. Symptoms range from numbness, dizziness, and

trouble concentrating to memory loss, blindness, and paralysis. About

400,000 Americans have MS; about 100,000 of them are in wheelchairs.

Being an enterprising Ivy Leaguer, I've spent a lot of time since my

diagnosis familiarizing myself with the disease and the efforts to

cure it. Just like you would, I want to both find the best immediate

treatment for myself and make sure that real efforts are being made

to cure the disease in the long-term future. However, in the course

of my research, I came across a lot of defeatism among people with

MS. In fact, I found a large Web community of people who had given up

on the designer drugs altogether. Whether because they couldn't

afford them, because they couldn't tolerate the devastating side

effects, or because their symptoms just weren't affected by the

drugs, these people have turned to less conventional therapies. The

most common and fastest growing of these is Low Dose Naltrexone, a

drug with a ton of anecdotal evidence but no scientific studies

proving that it helps MS sufferers. At least 1,000 people in the U.S.

alone probably use LDN, which works by stimulating the body to create

more endorphins, modifying both pain reception and immune response.

This piqued my curiosity. If so many people are using LDN and

claiming that it works, then why isn't it being tested for FDA

approval in treating MS? The answer should have been obvious: LDN

can't make anyone any money. The active ingredient, Naltrexone, was

developed so long ago that no one holds a patent. Generic versions of

the drug can be created and sold for a few bucks a dose, like

ibuprofen. If LDN were certified for MS by the FDA, pharmaceutical

companies would lose millions.

This means that no pharmaceutical company would ever pay to test LDN.

Fine, then, what about research institutions? Well ... no

institutions are stepping forward either. Large research interests

like Columbia's Medical Center also put a premium on intellectual

property, and doctors there are pressured to find drugs from which

they and their employers can profit. It is possible that a good-

hearted doctor will eventually apply for a grant to do a study on the

relationship between LDN and MS, which would probably cost between

$600,000 and $3,000,000. Maybe Dr. Ian Zagon, a researcher at Penn

State who has already done important work demonstrating the

effectiveness of LDN in cancer treatments, will study MS next. Dr.

Bernard Bihari, a New York neurologist who has prescribed LDN for

both MS and AIDS, is another candidate. As of yet, no one has stepped

up.

Attempts to cure MS are financially dominated by pharmaceutical

companies that have no interest in unprofitable solutions. The

National MS Society only funds projects that are initiated by outside

researchers, and they spend just 20 percent of their funds on

research. There is no large-scale institution dedicated to advocating

and developing new trends of research in MS, especially when those

trends don't promise to be lucrative. Luckily, the internet now

provides a forum for this problem to be recognized and remedied.

Through message boards and Web sites built by non-profits like the

Boston Cure Project, people with MS are starting to recognize and

address the shortcomings of MS research.

It's easy to make people with MS care about new approaches to finding

a cure regardless of the profit model. It's much harder to convince

the people who have the resources to make the cure possible, who

usually do not have MS. If you've read this far, maybe by now you

have some interest in finding a cure. Maybe you agree that it's not

right to allow commercial economics to determine how a disease is

researched and treated. Maybe you can help find a way to fix this.

After all, I used to be a lot like you.

http://www.columbiaspectator.com/?q=node/15130

[Guest guest]

Art, I thought that article hit the nail on the head, for sure!! I just went to my neurologist for a check-up and to get a refill. Haven't had to see him since I started LDN. I was having to call him regularly for dose packs of steroids. I think I am probably his only patient on it. I know he thinks I am being kind of foolish not being on something else. But at least he respects what I want to do with my treatment! He told me he considers me in a "placebo group." Well, I will gladly stay there since I have had no progression in the 1 1/2 years I've been on it! Thanks for being out there for us!

[Guest guest]

said: his doctor considers LDN a placebo.

Although I know placebo's due occur and it is a genuine effect and I believe we really can effect our own bodies by our thoughts; I find it funny that doctors would fully back the placebo effect before believing in LDN. What a strange thing.

I told my mom's Parkinson's doctor about my husbands miraculous results with LDN for his MS. He said, "oh, that is just a placebo effect, it should only last about 6 months and then his symptoms will come back". I told him, "well don't tell that to my husband because so far it has lasted him 3.5 years".

Also keep in mind that over 10,000 kids with autism are on LDN. They typically have good results. They are kids with autism with parents most likely not explaining to them what to expect, they get their LDN in a cream that is rubbed into their skin and usually while they are sleeping. Obviously they are not having a placebo effect.

All my best

Aletha

[Guest guest]

It might also be noted that LDN has worked very well in animals. I

think it would be pretty hard to convince a cat, dog or horse that a

medication will really make it feel better. Animals are not very

susceptible to the placebo effect!

Konnie

>

> said: his doctor considers LDN a placebo.

>

> Although I know placebo's due occur and it is a genuine effect and I

believe we really can effect our own bodies by our thoughts; I find it

funny that doctors would fully back the placebo effect before

believing in LDN. What a strange thing.

>

> I told my mom's Parkinson's doctor about my husbands miraculous

results with LDN for his MS. He said, " oh, that is just a placebo

effect, it should only last about 6 months and then his symptoms will

come back " . I told him, " well don't tell that to my husband because

so far it has lasted him 3.5 years " .

>

> Also keep in mind that over 10,000 kids with autism are on LDN. They

typically have good results. They are kids with autism with parents

most likely not explaining to them what to expect, they get their LDN

in a cream that is rubbed into their skin and usually while they are

sleeping. Obviously they are not having a placebo effect.

>

> All my best

> Aletha

>