Saturday, August 10, 2013

It Finally Happened #gilenya #multiplesclerosis

Yes, I know I said the party was over, and truth be told there's nothing left here on this blog but the confetti on the floor and a bunch of empty solo cups to pick up.

But for the entire duration of this blog, which has been about my experience in the TRANSFORMS clinical trial for the MS drug Gilenya (fingolimod, FTY720), I never had a relapse.

I guess this blog was my lucky rabbit's foot. I should have kept it going. The minute I called it quits (and yes, I realize it's coincidental, but the irony amuses me) I have a bona fide relapse.



For the past week or two I have been suffering crushing fatigue. No all-nighter in my 20's could ever have topped this. A feeling like Horton is sitting square on the center of my chest.

Then, when I'm able to shove him off my chest and become vertical, I realize karma thinks I'd look faaaaaabbulous in a lead suit.

Alanis Morissette left a verse out... "like gaining weight, when your legs don't want to move". I'm serious. I was stuck in bed part of that time taking comfort in snacks because they made me feel better. Thank God the worst of it was over after only a couple weeks or they'd be cutting a hole in the wall to get me out of this joint.

I called my neuro when I finally decided it wasn't just hypochondria getting the better of me (is there an opposite of hypochondria because I think I have that now. Whoops, no, there I go begin a hypochondriac so I guess I'm good).

I went to have a checkup at the clinical trial center and they did the EDSS on me. I had increased weakness in arms and legs, numbness in parts of my forearms and calves, and for the first time EVER I couldn't complete the 500 meter walk.

They always made me do 24 laps of the study center hallway which measures out to be a total distance of 500 meters. I have always completed it (one time in just under 10 minutes), and always unaided.

Yesterday I asked for my cane after 2 laps and had to cry "UNCLE!" after 18 total laps. The study coordinator said "wow! something really is going on, isn't it!"

Duh!

So I will re-end this here now that there is an ending and "Girl Has Relapse".

I'm not gone, however. My new obsession, besides writing for www.healthline.com, is my site, www.partnersinresearch.org, where I'm hoping to educated people who are curious about clinical trials for MS what it's like from a patient point of view.

Also, stay tuned for an update on where I'll be blogging just any old stuff. I need a place to vent and this blog is too confining. There's more to me than my MS, after all. :)

Peace out.

Monday, July 29, 2013

The After Party #partnersinresearch #clinicaltrials #multiplesclerosis

My story here really ended a long time ago when I exited the TRANSFORMS trial on January 20, 2011. The show was over, but I've just been hanging around, excited to connect with so many people who have found me here on my blog and followed along.

This blog, for those of you who are just tuning in, has made a spectacle of itself as it was discovered by big pharma (thanks, Craig Lipset from Pfizer!) and a surreal conversation began. From that one encounter, a bridge was built between the real live trial patient (as opposed to anonymous Donor of Data) and the people behind the clipboards. Here's a fun fact: THEY'RE real people, too! Passionate and dedicated to their life's work, individually they are not nearly as evil as most of us perceive.

I attended the Disruptive Innovations conference and was an oddity to be examined all over again, as they puzzled over just how an industry so regulated might speak around the gag in their mouth and have a real interaction with those of us lab rats behind computers, engaging in social media. It's become a topic very near and dear to me.

Because of this conversation I have been propelled by the force of destiny into the role of patient advocate, and have had the honor of attending several conferences to represent the clinical trial patient and speak to the unmet needs of the patient side of research. I am not unwilling to assume this role, but I know what that girl at the Springsteen concert must have felt like when she was pulled on stage to dance with the band.



Big Pharma pulled me onto their stage and I'm trying to make my dance matter. Whether or not it was ever my intention, at the start of this blog, to become a patient activist seems not to matter any more. What's done is done and I feel the weight of responsibility on my shoulders. I want to represent for patients everywhere and give a voice to those who feel they have no voice.

I was once terrified to enter a clinical trial, but equally terrified of the suffering my MS was doling out. I started this blog when I was a trial patient hoping for a modicum of relief. The incredible benefit I got from that journey–having not had a relapse YET since taking the very first pill on Aug. 20, 2007–has bought me time to do the bigger things I believe I was meant to undertake.

First with the blog, then with Novartis' "Guide Network" of patient speakers for their marketing program, and now as a patient advocate, I go through doors when they open for me. So far, I haven't been disappointed yet.

So, I think it's time to move on. I know I announced blogging my extension trial but wouldn't you really rather go watch paint dry? I mean, it's more exciting, as it turns out. Nothing to see here, people.

Also, considering the name I have chosen for this blog and how closely tied to the medication most of the content is, I have outgrown the desire to post here. It will stand as a testament to clinical trials and the difference it made in my life, but since I have departed from being a part of the advertising campaign (the Go Program) for Novartis, it's only fitting that this blog be put to bed as well.

What started out as a hypochondriac keeping a journal of her clinical trial turned into a platform for so much more.

I'll still be blogging, but stick this one with a fork - it's done. To limit myself to be forever seen as merely Novartis' biggest cheerleader is too confining a container. I'm thinking outside the medication box now. Moving on to bigger and better things.

The day I got my nails done to match my Gilenya box. Hard core cheerleader. :)


Please join me, together with my friend Anne, who was also a clinical trial participant and Gilenya Guide, as we embark on a new call to action... our brand new website....

www.partnersinresearch.org


...where the conversation about MS, clinical trials, and how you can become a patient activist continues.

Partners In Research is intended to be a place where those who are interested can find out all they need to know about clinical trials. We will be expanding the content to include informational videos on the topic of research and adding blog posts from a patient perspective to help MSers see what a study is like from the inside.

We have just launched our Facebook.com page as well at:

www.facebook.com/partnersinresearch.org

I'll miss you, so please come visit over at Partners in Research! :)

Thanks for playing along!

Thursday, July 25, 2013

#drugprices : The High Cost of Quality of Life and How You Can Effect Change #socialmedia #activism

If you suffer from multiple sclerosis (MS), unless you have lived in a cave since 1993 when Betaseron, the first FDA approved disease modifying drug (DMD) came on the market, you are well aware that the cost of these drugs is astronomical. It seems morally wrong to put a outrageous price tag on a substance–capable of improving quality of life for those who suffer from this disease–only because people are desperate to get it.

Drug companies, when asked to defend their pricing strategies, quickly point out that the cost of research and development (R&D) is exorbitant, and only a small percentage of drugs ever win FDA approval after decades-long trials. If a drug wins that distinction it must pay for not only its own R&D costs, but for those that failed as well.

But there's much more that factors into how these drugs are priced.


I had the honor of speaking with one of the country's foremost experts on the topic of drug pricing, Dr. Kenneth Kaitin, a professor at Tufts University School of Medicine in Cambridge, Mass. We spoke for nearly thirty minutes on the topic of drug prices, how they are achieved, and the emerging power of social media to effect change.

He spoke to me about value, competition, patent life, and more. But he also spoke at great length about how patient groups, physician groups, and individuals are increasingly effecting change, enabled by the power of social media.

The interview was part of the research I did for the two part series of articles I wrote for Healthline.com:

Part 1: Should Multiple Sclerosis Drugs Cost $62,000 per Year?
Part 2: Voices For Change: How You Can Impact MS Drug Pricing


In short, the pharmaceutical industry is one that operates like any other. They depend on their cash cows–in this case the MS drugs–to be the stable, revenue-producing portion of their portfolio that allows them to invest in riskier, cutting-edge research that often yields astounding breakthroughs in medicine. Like it or not, it's the system we have.

To be certain, all drug companies now offer generous patient assistance programs, so the majority of those who want them have access to the DMDs.

If you need to be on a DMD but think they are cost prohibitive, be sure to ask your neurologist about the programs available to assist in covering the cost.

After writing the series I felt uplifted, empowered, and motivated to use my online presence to try and inspire others. There are so many people suffering from MS out there who are sitting at home feeling powerless, frustrated and desperate about their situation. They feel hopeless to change the course of their disease, or they can't afford health care to try.

In this age of social media, however, activism is only a keyboard away. If you want to make a difference, start by joining the National Multiple Sclerosis Society, encourage those at a local support group to do the same. Get involved in speaking out. Blog your hopes and dreams for the future of healthcare, send your congressperson or senator an email about your situation and your desire for affordable medicines and healthcare. Take a stance and use your voice.

Every little bit helps. I'm going to use my voice to educate others on personal empowerment and how to effect change.

Now go do something positive and never forget: One person CAN make a difference.