Are we too passive?

[jerrygallow]

I watched the documentary "How to Survive a Plague" this week. The film follows the group Act UP, which was an LGBT activist group, from the beginning of the Aids epidemic. I couldn't help but draw parallels to the MS struggle as I watched.

They faced the familiar red tape in Washington, the drug companies dragging their feet, etc. At first, none of the therapies were effective, then some were somewhat effective but disappointing. This is where we currently are with MS.


But in the late 90s, they hit the jackpot so to speak by combining certain drugs. The effectiveness rate skyrocketed, and now AIDs is no longer a life threatening disease for many.

But they didn't just get there by accident or by sitting back and waiting for the process to work. They were extremely active. They had scientists and MDs, insiders at the FDA etc. who proposed studies, and basically took the system by the hand and led it along. I don't know how I feel about their tactics of staging protests and taking over offices etc., but they achieved their goals.

It was eye opening to me since I didn't know much about AIDS. But we face the same disappointing cycle of false starts, weak drugs, and red tape. I wonder what would happen if we actually had a real advocate group, as opposed to the mess that is the MS society. What if we were motivated to fight until we were heard and got results? What if the answer is there waiting to be tested?

[cheerleader]

Hey Jerry--
Great point. I actually wrote about this very topic in my blog regarding the development of AIDS treatments and the Dallas Buyers Club (created to get non-FDA approved treatments into the hands of people with AIDS) --I'm not sure if it is passivity in the MS community, or the fact that AIDS was a death sentence, and this created an immediate need to look for answers. AIDS patients also didn't have a "society" funded by pharma. The MS Society was originally created by Dr. T.J. Putnam and the sister of a man with MS, and they set out to find the disease etiology.

Ron Woodruff fought the FDA--to expand treatments for people with AIDS. The FDA and NCI had partnered with one drug company, and would only approve one treatment, AZT. It took heroes like Ron Woodruff to change this. His story is told in the Dallas Buyers Club.

In 1987, Ron begins smuggling drugs across the border and selling them to other HIV patients. This effort to save his life and help others begins the Dallas Buyers Club. I was happily surprised to learn that some of the supplements in the protocol he sold included silymarin (milk thistle), natural antivirals, and omega 3 oil (part of the Endothelial Health Program.) These "buyers clubs" were set up around the country, to help thousands of AIDS patients deal with their symptoms and to give them quality of life-- by selling them hundreds of alternative treatments, many of which were brought into the US illegally. These treatments extended the lives of thousands of people with HIV, often by many years and even decades past their expected life span on AZT alone. In fact, a virtual anti-viral cocktail and other supplements has now become the accepted form of treating HIV, thanks to the efforts of these first patients. HIV is no longer a death sentence, because of the work of these heroes.

I'd forgotten the history of this era--it was a time when AIDS patients would protest outside the FDA office in Washington, calling for faster approval of treatments to slow the disease. And all the while, the FDA stood firmly behind one treatment and one means of disease modification--AZT. Here's the interesting history regarding how AZT, a drug created to fight cancer which failed in cancer trials, which was later developed for use in HIV thanks to a unique, and perhaps questionable, partnership between the National Cancer Institute and Burroughs Wellcome, a drug company focused on anti-retroviral medications.

More here--
http://ccsviinms.blogspot.com/search?q= ... uyers+club

cheer

[Leonard]

true, so true, there is so much red tape in the system!

and yes, for AIDS public advocacy groups helped change the picture, made a remarkable difference.
this paper on MS recognises quote how patient engagement has helped improve outcomes for people with HIV.
http://www.msinthe21stcentury.com/file/ ... nt_Grp.pdf

I do not think that the fact that AIDS was a deadly disease and MS is not makes a whole lot of difference.
Patients can be extremely motivated when it concerns their health..

Perhaps we are too passive, perhaps we need more organisation as patients to get our voice heard in our Capitals...

[Yodi]

You have a good point and for sure we all would like to support your idea.

However, the crucial difference is that there were / are world wide many more people facing AIDS than MS.