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!

#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.

Are You Up For The Challenge? #ctdesign @Lilly_COI Launches Patient-Centric ChallengePost

Before the term "Patient-Centric" was coined

Let me take you back. The year was 2007. I was at my wit's end, ready to pull the plug and give up. I was suffering one relentless MS relapse after another and seeking relief by any means possible. I read about the TRANSFORMS trial (Gilenya, Novatis AG) in the back of an MS Focus magazine. I decided I was desperate enough to get on the hamster wheel in the proverbial lab rat's cage.

But it was 2007. My cell phone wasn't smart, and the research study as it appeared on www.ClinicalTrials.gov was not in the least inviting for a patient who was both terrified and out of hope.

But I had no alternative to finding out what being a patient would mean. There weren't even any blogs out there describing it at the time. I got my Informed Consent document and it looked like exactly what it is: a legal document that states I agree, after reading every horrible thing known or suspected about what I may or may not ingest or have performed on me, to willfully partake in the study knowing that I might be the reason they discover some terrible side effect through what is known as an Adverse Event.

Between the study description on www.ClinicalTrials.com, which looked like a page ripped from a college chemistry textbook, and the informed consent, which appeared for all the world to look like my Last Will & Testament, I was not left feeling all warm and fuzzy about the idea of joining.

To someone born a hypochondriac, with the same genetic makeup of her mother who is a world class worrier, all of this was rather foreboding to say the least. But that was nearly six years ago.

When I look back now, joining that trial was the single most courageous thing I have ever done. It was also the most life-changing. I was one of the lucky ones who was randomized into the arm of the study that got the, now approved, .5mg dose of Fingolimod from the very first day. My last documented relapse was in April 2007.

The fact that I have been relapse-free this long has allowed me to concentrate on other things in my life. Like advocating for future clinical trial patients, which is why I am excited to share this bit of news with you....

Making Clinical Trials Less "Clinical"

Eli Lilly's project, Clinical Open Innovation, is all about transparency and sharing information in the world of research, with the end goal being a cumulative effort at moving healthcare forward to benefit everyone. To quote directly from their "About" page:

Eli Lilly Clinical Open Innovation is founded on the belief that drug development processes must improve, and that open innovation methods can be used to make clinical development better.  We’re a small group of Lilly employees coming from diverse educational and professional backgrounds in disciplines like pharmacy, philosophy, IT, English, sales and management.  We’re interested in working with you to make a difference.

As it turns out, they aren't all hype. They have recently taken the subject of making clinical trials more "patient-centric" by the horns and have launched a contest to actually DO something about it.

On June 14th they posted the contest on their own blog at Lilly Clinical Open Innovation. This contest is open to all, with huge cash prizes.

It's a brilliant idea to gather all the great minds of designers, patients, healthcare professionals–anyone who wants to enter–and let them loose on the task of making clinical trial information found on www.ClinicalTrials.gov more user friendly for the person seeking to become a clinical trial patient. This data, as well as the Informed Consent, are getting a What Not To Wear makeover.

The contest takes place on ChallengePost and you can get all the details there.

From Lilly COI's blog post:

We’re inviting all patients, healthcare providers, web developers, designers and others to help redesign the clinical trial protocol and informed consent document with the patient’s needs in mind through our Clinical Trial Visualization Redesign Challenge.

We’ll provide a sample clinical trial protocol, its informed consent document and associated ClinicalTrials.gov record reference. Your mission, should you choose to accept it, is to transform those documents into resources for patients that improve the:

• Visual appeal
• User-friendliness
• Potential for web and mobile applications
• Clinical trial experience for patients.

I have been invited to be on the panel of judges selecting the lucky winners. I bring to the panel the unique perspective of having "been there, done that" with my own personal clinical trial experience. I am honored to have been considered for this role and really excited to get to see all the entries first hand.

So spread the word! This is a project that will have far reaching implications for years to come as all of the entries, according to the rules, will become open source and fall under the Creative Commons Attribution 3.0 Unported License. This means there is no price tag on genius. Share and share alike for the common goal of making research take a huge leap forward in the name of progress.

None of what is created will be thrown away or lost in the shadows of the winning entry's spotlight, for everything created for this challenge post has the potential to be utilized in the future, bringing  information to a new breed of clinical research partners (i.e. the patients) in a way that is meaningful, relevant and easy to understand.

Not only that, but doing so using a  digital, portable format patients are becoming increasingly dependent on in all other areas of their lives. It makes sense that research partners be engaged in a way that is both familiar and convenient for them. This can only have a positive impact on the patient retention rate and help with their study compliance.

Putting the Patient in Patient-Centric

I am excited to think that there might soon be a time when patients who are sick and tired of being sick and tired can consider research as not just the "when all else fails and I'm ready to die or join a trial" option, but as a viable treatment option, opening new avenues to explore. They might have the opportunity to effectively battle whatever disease with a new treatment years before it becomes readily available to all.

One day maybe research will be viewed as a lottery of sorts. Yes, there are great risks, hence the need for the informed consent. But there is huge potential for personal reward as well as the knowledge that by doing your part in joining a trial, you are helping to advance science for all. I feel like I won the lottery when I joined the TRANSFORMS trial and was literally given back my Quality of Life.

And when you get right down to it, isn't that what research is all about? The never ending quest to strive to improve the Quality of Life for all mankind? No matter how you slice it, that's the goal.

Making the process of finding and joining those trials more inviting and easier to understand can only be a good thing.  The audience this contest is intended to reach is none other than the very brave souls needed for any research to happen in the first place. You can't have patient-centric trials without patients.

Cheers to Eli Lilly for sponsoring this event and making "patient-centric" be something more than a catch phrase.

Good luck to all who enter, and I thank you on behalf of all future clinical trial patients who will one day benefit from your creativity. I hope it's not lost on any of the contestants that you are part of something much greater than this contest.

So, with that said....

Let the designing commence!