PSA: Legit MS Trials Don't Cost 5 Figures Out-of-Pocket

[immisceo]

Even though I'm aware this occurs all too frequently in a world with vast medical ethics and income disparities, seeing a recent incarnation really boils my blood. Even though the "CCSVI" craze has died down somewhat, it seems it's been supplanted by those promising stem cell treatments.

This iteration I find more troubling because there is simultaneously high quality, important research in this area going on, such as that conducted by our Kyle's own neurologist. These other hucksters are able to parley the reputation garnered by genuine research into their quick buck. One more sad example: http://www.winnipegfreepress.com/breakingnews/Sufferers-feel-swindled-288496041.html?cx_navSource=d-top-story

[immisceo]

Thanks for adding another valuable perspective, Laura! (and thank you for soldiering on in your trial)

But I think we on both sides of the Atlantic (and Pacific!) are on the same page when it comes to '"trials" that ask you to pony-up your life savings from day one and give you the boot when you start asking questions. (referring to my original link).

We all do really have to keep our wits about us when it comes to hunting down and advocating for our treatment(s). Just another unexpected skill set we can pick up in our disease-fighting arsenal!

[Lulu54]

I would NEVER want to frighten anyone from participating in a clinical trial because of the costs to the patient, but unfortunately here in the US there is still almost always a cost, although it is sometimes hidden.  

For example - I am doing an extended release baclofen trial and am now in the open label part of the study.  The means  I get the real drug for free,  However, there is now no compensation for my travel or time.  The token amount they paid during the first six months was only $90 every third visit.  Now they see me every three months and if I can't coordinate the time with my regular visits and infusions, it necessitates I take sick leave from work.  The sick leave time is real $$ to me and my employer.  I have also not been compensated for mileage that can add up, especially since i have been doing this for well over a year.

They may the argument that i am now getting the drug for free, but if I were on it through my prescription plan I would only be paying a small copay every three months anyway.

The system here for trials is a real mixed bag and almost always the patient is subsidizing the work in one way or another. :-(  .  It makes little sense if we really want to advance MS research because not every one is able to subsidize the participation through their own resources.

[immisceo]

Yes, it's a crazy ol' system we humans have created for ourselves with regards to medical advancement. I'm not naive—oftentimes the delicate balance between market demand/profitability and good outcomes for patients *can* lead to innovation and advances. Bad man oh man it can go badly too!

I'm no "insider", but I do know that my participation in a pharmaceutical company trial at my hospital (which costs me nothing and travel expenses are reimbursed) in turn helps fund the less profitable academic research at the same institution. Strange bedfellows, but that's the state of play and it was made clear to me before I signed up.

Laura, I was unaware about the HALTS trial situation. Such a confusing set up (NIH sponsored, supposedly insurance-funded). At least in that case, Mr Bexfield's outcome may set an important precedent in those specific circumstances.

That's a very useful link, Kyle!

[Lulu54]

I just read the story - what a pompous A$S.  I hope he gets his comeuppance, and soon.  The story just illustrates how desperate we might become when there is no cure in sight and just continuing decline of our physical condition.

thanks for sharing that link, Imme.

[Lulu54]

The funding situation in this country is very pathetic for clinical trials and the ones that aren't sponsored by PHARMA money can sometimes be charged to the patient and their insurance. Unfortunately sometimes trial patients still get stuck with the bill - check out the story of Dave Bexfield of active MSers and how he had over $200,000 in bills from his participation in the HALTS trial.  His insurance denied coverage.  It was only because Dave knows how to work the media and generate lots of press that they finally gave in this past year and paid him back, with interest. He also turned this into almost a full time job to get their attention that he wasn't going away.

http://www.nytimes.com/2014/08/03/your-money/the-haggler-dogged-persistence-pays-off-with-interest.html

But to keep on the point here - please listen and do not spend $$$$ up front to travel some exotic place for an unproven treatment - you are only asking for disappointment and a much lighter wallet.  AS much as I want to travel to Europe or the Caribbean islands, I will do it as a tourist and not as a patient.  -Laura

[kwarendorf]

Patients do not pay to participate in legitimate medical research. In fact, te ads recruiting participants often stress that all medical expenses will be covered by the sponsor!

it's sad that we're not only as prone as non-MS folk to get have other medical issues, but we are as viable a target for fruad as everyone else. If you are investigating research trials, and they start to talk about your costs, get up and run away!

Here's a link to the legitimate state of stem cell MS research, from our friends at tha Natl. Mul. Scrl. Soc.

http://www.nationalmssociety.org/Research/Research-We-Fund/Restoring-What-s-Been-Lost/Repairing-Damaged-Tissues/Stem-Cells-in-MS

kyle

[HVAC]

Unfortunately when people are desperate they will latch on to these schemes and the people after the big bucks know this.

Sometimes people do not know the difference between Kyle's doctor and those out for a buck.

Alex