Thursday, December 30, 2010

When Will CCSVI Stop Being Treated Like a Bastard at the Family Reunion?

Try as we might, we can't control everything. We have supported and helped each other well over the past year in regard to MS and CCSVI. I understand as well as anyone how important it is to me and all of us that we have good follow up care. There are a great many people who have spent almost all their time and energy to spread the word and contribute where they can. Some have more than others to give; time, money, emotional support, research results, etc. We need to keep in mind that we are responsible for our own health care, which includes securing a doctor to perform our angioplasty procedure. Keep in mind that while our choices were almost nil 10 months ago, our options are still very limited. It is not in our best interest to go outside our local area. We all understand this, yet I would be lying if I said that I would rather convince a local doctor to learn the procedure and volunteer to let him practice on me. That is exactly what many of us did out of necessity. If I had the option of the latter, or traveling to a doctor who has a lot of experience in this arena, I wouldn't hesitate to travel. We have to be realistic. Who among us wants to fork over $10,000 to have a procedure which their doctor has had little experience? On the other hand, if we don't garner doctors in our own area, there will never be enough providers to make this globally available. It is a conundrum few of us are comfortable with, yet we have to address it sooner or later.
Unfortunately not everyone has the where with all to bring treatment to their respective cities. Even where this has happened, not all doctors agree on the same technique or protocols, as it were. I for one am grateful to anyone who has helped in the smallest way to forge ahead to insure treatment for everyone. It was nothing short of torture for me to find my own doctor. I was lucky to find my eye glasses. I took hours to type what once could be accomplished during TV commercials. Many PwMS have cognitive problems as well as physical limitations that make the simplest of tasks difficult. I was very lucky, period. I did quite admirably for myself, but not without the aid of others. I also cannot look someone in the face and tell them to go hunt up a doctor. I also can't provide one for everybody. That is an impossible task for anyone. Those who had treatment early on were aptly tagged as guinea pigs. I became very angry with people who wanted access to the procedure as long as they didn't get their nails dirty. Where and whenever we can ease the burden, we should.I surely can't force any doctor to hire a PR agent to advertise what is clearly not yet an accepted procedure. No person should be forced to lie to insurance companies to get approval either, but it is what it is. That so much has been accomplished in this short span of time is medically speaking, amazing. People who think that PwMS have it made in America are sadly mistaken. There is considerable pressure to modify progress as much as possible. In addition to finding doctors and fundraising, we need public opinion and political support. Mainstream media has not been our greatest ally. Some are doing a great job, most are having a good laugh at our expense. We do make an amusing pastime. A few well known people have come to our aid, too few. JK Rowling, Annette Funicello and others have been quite generous. The people who have sworn us their allegiance, for example our neurologists, MS societies, governments and other MS "support" groups are not a part of our fan club. There is not enough profit in it for those. I intentionally didn't list the drug companies because they have never pledged anything to us other than their advertising schtick. The sad truth is that the support of highly visible and influential people come from either the ones who have MS themselves, a loved one with MS or someone who stands to benefit financially from advocating the procedure or have some other vested interest or personal agenda. If there are any outside of that criteria, I am woefully ignorant of their identities. Celebrities who have aligned themselves with other treatments and therapies aren't willing to give up the gravy train mid-stream for the likes of real people with CCSVI. Some employees of the above mentioned groups broke ranks to have the procedure for either themselves or a family member. They did not do so publicly either, but rather added to the entire secretive, carnival like atmosphere that we have unwillingly become a part of and witness to.
As much progress as has been made, the disparity in the supply and demand will continue to grow as more people with Multiple Sclerosis are made aware of this treatment option. I estimate that only a third of the MS community knows anything about CCSVI or are woefully misinformed. You can test my postulation by signing into the NMSS website or any of the for profit research support sites and share your own CCSVI story. The response will positively tickle you unless you wear your heart on your sleeve. Those who stand to lose status, reputation and an obscene amount of money will continue to work diligently to ascertain that CCSVI remains a controversial,divisive issue in 2011. They have had years of success so far. Dr. Zamboni, the World Wide Web and technological progress in medical imaging have been the most substantive flies in their ointment so far. Until now all research, and studies have remained in locked file cabinets and external hard drives.
We are becoming a force to be reckoned with, but not without further sacrifice and diligence. We still must make every effort to find and convince interventional radiologists, vascular surgeons, neurosurgeons and our general practitioners the efficacy and benefits of angioplasty for CCSVI. The brave among us may want to share the information with their neurologists, but expect fireworks. Most of them are a bit touchy about being told they have been treating the wrong disease. Here's to a better year in 2011

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