Sunday, April 25, 2010

Insurance Coverage, Social Media, Advocacy Orgs, and Pharma Sponsorship

I've been contemplating something in recent days. Has my perception and opinion of the healthcare industry, specifically Big Pharma, changed since I've changed medications?

Many of you may not know, but the reason I started this blog was to contribute my voice and personal experience to the ongoing discussion of health policy, health insurance, Big Pharma, leaky safety nets, and prescription costs.

Previous Experience

For the years 2005-2009, I lived under the oppressed situation of having to force myself into earning poverty level (200%) income in order to get the financial assistance I needed to obtain Copaxone from NORD (National Organization for Rare Disorders). Teva funds the assistance program and NORD administers it.

Also, I had to insure that I didn't have a significant level of liquid assets in the bank. All aspects of my resources, earnings, and expenses were scrutinized...even down to the detail of NORD adding back the cost of a black concert outfit into my earnings (which were verified by submitting my 1040 Federal Tax form) because they said "clothing should not be a business expense."

How's that for ridiculous? What really infuriated me was that I was penalized for being debt-free. No mortgage, no student loans, no car payments...and I live in an area where a typical salary for a mid-level job is closer to 800% Federal Poverty Level.

Unfortunately, NMSS, MSAA, MSF were each ineffectual to help me figure out my situation and find a solution. Talking with a few patients online (on a pharma-sponsored message board), letting my neuro nurse know my need, asking for help from my local union office, and finding one person who located a small program in my county helped me navigate those difficult months without any assistance.

New Experience

In contrast, this past winter I experienced something I've never experienced before. My insurance company fully covered a $17,500 Rituxan infusion at their allowed rate of $11,300. I didn't even receive a bill from the hospital for that particular procedure.

How did that happen? I had satisfied my $2500 out-of-pocket limit (for covered services) from insurance for 2009 with the previous $17,500 Rituxan infusion. Wow, that was kinda cool!!

And to make things even better, the makers of Rituxan offer a copay assistance program which is not income based. They will pay the patient's out-of-pocket expense for the cost of Rituxan up to a $4000 limit each year for eligible patients.

Although the program wasn't as easy to use as I had hoped, eventually they did pay all but $105 of my copay for the first infusion. They paid $978 directly to the hospital after we figured out that insurance allowed 65% of all charges, straight across each ine item, including charges for the drug itself. It was rather difficult to satisfy the program's need for proof of charges and allowed rates because neither the hospital nor the EOB showed such detail (for each line item).

Out-of-Pocket Limits Fulfilled

Next month I'll be receiving another round of Rituxan infusions. I've decided to try a different hospital out-patient center, mostly for comparison. I can only assume right now that the charges will be similar.

If so, I will have practically fulfilled my out-of-pocket limit for the year and the vast majority of that (80%) will have been paid for by the copay assistance program after two infusions. This is such a huge weight lifted off my shoulders!!

I still have to pinch myself to believe it to be true. The difference in my financial experience between the two biologic drugs I've used, Copaxone and Rituxan, is simply because one is covered under my prescription coverage and the other under major medical...and the structure of the financial assistance programs.

Changes in Gut Reactions

Not having that burden does make me feel somewhat more friendly to the healthcare industry in general, including pharmaceutical companies. When a program is set up right it makes all the difference in the world.

Perhaps this is one reason why I might be willing to share my experiences and suggestions to companies who might actually want to listen and learn from them.

Sharing Knowledge and Experience

However, I've done just that in different ways already. In the summer of 2008, I blogged about Acorda and Fampridine. The CEO/President wanted to talk to me so we spoke for 2.5 hours on the phone. Now that Fampridine is finally approved and marketed as Ampyra, I'd like to think that something I said about assistance programs might have contributed to the program Acorda has now set in place through which many patients are benefiting.

In October 2008, I spoke about blogging and social media usage by patients at a communications conference for Johnson & Johnson. I had not presented at a program such as this before and didn't have powerpoint slides ready, so I used my blog and a live internet connection to illustrate my talk in real time. The convention took place in Orlando and J&J provided travel and lodging, plus an honorarium afterwards.

Perhaps this was ok because J&J doesn't produce any MS medications?

MS Community and Communications

In September 2009, I lent my opinions and observations to the National MS Society to discuss what they could do to improve their interactions with the online MS community. We discussed many aspects of what patients are already doing, what NMSS is not doing currently, and what they could be doing.

While I was at the NYC office, I shared many more opinions and experiences which others have discussed online, including the frustration that NMSS emails to MS patients always include a request for donations. Persons on the panel seemed genuinely surprised that this was an issue. ?!!

Being the ONLY person in the room who actually had MS was quite an experience. The others learned things which surprised them and I realized that we really need to be discussing issues with those organizations and companies who are supposed to be helping us and providing services in some way.

NMSS paid for my travel from DC to NYC by train and taxi (approx. $300) and dinner after the meeting.

Making a Difference

How many times has someone in the MS community expressed the opinion that - "they should talk to us and find out what we need or want!!" or "that website looks pretty but it doesn't really offer anything new or useful to help us!" or "they should come talk to US and learn what patients are doing already or what we want!"

At the NMSS meeting, I told the other panelists that patients really do want to interact with the doctors and scientists involved in research. We want to know more in-depth details. We'd like to have our questions answered. We also want programs which would make more of a difference in our day-to-day lives.

Adding to the Discussion

At the time I asked what the NMSS thoughts were on the CCSVI theory (which had not been highlighted in Canadian television just yet). At that time the topic hadn't hit the broader MS community, but only a smaller group who hang out at the This Is MS forum. I was met with blank looks and surprised responses. I gave them a heads-up that increased interest might be coming.

Later someone suggested that I was an unusual patient, an exception, one who was more tuned-in to current news and obscure science. My response was that many of us are tuned-in and I'm not THAT unusual.

I'd like to think that the webforum NMSS hosted a few weeks ago including Dr. Zamboni and others was designed with the understanding that MS patients really do want access to information and to have equal contribution to the discussion. I was impressed that NMSS opened up an opportunity for patients to submit questions which were then addressed in the online forum. Our questions were given equal weight to those of reporters from Medscape, WebMD, or other health resources.

That's definitely progress!!

Social Media and Patients

For this coming October, I've been invited to contribute to a Patient Panel at the 2nd Annual Medblogger Conference in Las Vegas at Blog World/New Media Expo 2010. I don't have a specific topic just yet, but you can bet that the experience and viewpoint of MS bloggers and the benefit of our community will be shared. I haven't asked yet, but I imagine that my expenses may be paid by the sponsors of the Medblogger Track.

Social Media and Sponsorship

There has been a great deal of discussion surrounding how pharma might be able to better engage (and serve) patients in various social media situations. Some pharma companies are sponsoring unbranded websites featuring real patients such as the group of bloggers who are contributing videos and blogs at

I like to think that by sharing our thoughts and experiences, just as we do on our personal blogs, we will help patients who are looking for real patient experiences and stories. Personally, I don't sugarcoated stuff and really talk straight from the heart. It's the only way I know.

Advocacy Groups, Pharma, and "Social Media"

Then there are projects which are modestly interactive such as We Keep Moving which was initiated by National MS Society with the support of a pharma company. Each story is uplifting and inspiring, it's true. But they are stories as told by a production crew. Is that truly social media?

Fringe Benefits

On a related thought, I was thinking about the services and events which are offered by NMSS or pharma companies. Those presentations where a speaker is brought in and lunch is provided. Or the workshops at which pharma companies bring their tchotchies and we MS patients seem to greedily pick up pens, note pads, lip balm, yoga mats, lotion, hand sanitizers, DVDs, etc.

Are we feeding at the big pharma trough? Or do we feel that our medications cost so much that we are entitled to these fringe benefits?

Do we even want these items? This brings me back to the question - What do we want? How will pharma companies or NMSS know what we want?

If we think that companies and advocacy organizations will know what we truly want just by randomly reading our blogs, tweets, or message boards, then I believe we are mistaken. At least that's my opinion at this time and I reserve the right to change my mind at any time. :)

What is your opinion?


  1. Lisa, thank you for all you do on our behalf. Thank you also for a very informative survey of developments in the pharma/patient sphere. As for your questions What do we want? How will pharma companies or NMSS know what we want? For starters, we want to be given dignity and respect by being listened to, not being price gouged when our finances have been shattered by MS, and by recognizing that our urgency about finding a remedy/cure for this awful disease is as pressing as if a terrorist had his finger on a bomb button. This is an awfully graphic example, but the degree to which CCSVI electrified the MS community is a hint of the underlying sense of urgency we feel. This is not an illness that gives us the luxury of time to evaluate potential therapies in the normal measured way. Every second the clock ticks measures another neurological loss. More patient involvement in the process would go a very long way toward ensuring that these concerns are addressed.

  2. Great post, Lisa. I have to be honest when I say that I'm not sure what I want from pharm companies, the MS Society, and so on. Usually such a glut of information (online and off.) But definitely respect and a little more understanding. And more input from people who actually HAVE MS.

  3. Hi Lisa!

    Did you answer your very first question, "Has my perception and opinion of the healthcare industry, specifically Big Pharma, changed since I've changed medications?" I always felt that you were fair and balanced.

    What continues to surprise me is the large number of patients with MS who don't know what's going on, then they blame the NMSS for not spoon-feeding them. There are so many sources of information available, and not all of them require a computer.

    For example, I went to a support group meeting two weeks ago where the majority of people had never heard of Ampyra or CCSVI. One woman claimed that no one knew about the upcoming MS Walks. Considering the large amount of advertising in the local papers and billboards, I was stunned. People there didn't even know about the MS Foundation or the MS Association of America.

    So what do we want? Can't answer that easily because we are such a diverse group. But what I want is for MS patients to take advantage of the large variety of sources of information. I get four different magazines mailed to my house, so we don't have to have internet access to stay informed (but it helps).

    I loved it when I got a small cooler from MS Watch because I could use it to carry my lunch to work. A few people in a chat room complained that it said "MS Watch" on the front and they didn't want to advertise that they had MS so complained vehemently about the trinket. So what I want, is not necessarily what the next patient wants. This should make your life as an MS Blogger so much easier (NOT!).

    Phew, am I rambling? sorry!

  4. Loaded question and this is NOT a reflection on you, but, "If you have to ask..." Seriously? Did Jonas Salk have to ask what was needed when polio was affecting 20,000 people a year? After a mass vaccination was done by The March of Dimes and only 5,600 cases remained in the USA the year I was borm 1957, did the March of Dimes hace to survey people to gather a team to stamp out polio?
    I'd rather answer what I DON'T need: pens, coolers, glossy magazines, drug co. sponsored lectures (stop me now)---yes, I am angry. I am angry that MS has been given a back seat. I am angry that we must buck up and make do and be thankful we are not dead because it is only MS. If after 50 years ANY group must ask what we want...well, I don't think they could "hear" my answer. And I am NOT surprised no one in that mtg had MS. Sometimes I feel like a sick puppy someone is tossing some kibble too. (Costing $50,000 and out of their Mercedes from a gold packaged box.) I applaud your courage and calmness in dealing with all those caring (cough cough) representatives.

  5. Judy,
    More patient involvement. Absolutely!

    I love your responses to what you/we might want as starters: to be given dignity and respect by being listened to; to not be price-gouged; and to recognize our urgency in finding a remedy/cure.

    Especially echo the sentiment of wanting to be listened to. But the only way to be heard is to speak to the open ears. I'd like to see more open ears willing to exchange in a meaningful dialog.

    Thanks for your comment.

  6. Jen,

    Sometimes I wonder what I 'personally' want. At one time, I just wanted to get wanted I needed (medication) without feeling as though I was being f*cked around with. I was both angry with insurance policies and regulations which allowed me to not be properly covered and with the big drug company for not making their program easier to access.

    It's interesting you echo Judy's thoughts (and those of many MSers I imagine) that more respect and understanding would be welcome, while also getting more input from actual MS patients!!

    Such a simple concept, really. More patient interaction and involvement.


  7. Joan,

    Did I answer by own question? Maybe not. My opinion has not changed but my personal experiences have become more varied.

    When I come across something which is truly wonderful (at least for my needs at the time), I will share that information such as I did in RxOutreach Rocks!

    When I discover something which makes me cringe, I'll share that too. (see Pharma wants you to walk faster...

    One thing I haven't written about (yet) comes from the emails we bloggers often get from PR companies representing specific pharma companies. They will often make an offer of speaking with a doctor or research scientist involved in the newly released study.

    Several times in recent months, I've responded to the email with requests for copies of the study. I've gotten a couple of studies and several abstracts emailed to me. Then when the offer of speaking to somebody comes up, I've tried to make arrangements. Surprise, surprise. The person is unavailable at the times suggested. The company tried to arrange a different time. calls are never made. I even waited around at home for one which didn't come.

    I actually wanted to ask some questions specific to the research and would have written about it here. Instead, I simply haven't mentioned the studies at all. However, I might eventually give my snarky take on the outcomes. For example, if a 15-year study shows that relapse rates stay low in patients who use a particular product, but it also shows the number of participants who develop SPMS (which by definition means that they are not having relapses), how does their inclusion in the relapse rate of the group affect the outcome which is being touted by the company for their product over the long-term? Hmmmm....

    Now I'm rambling and ranting. :)

    The diversity of our group as patients is both nice and difficult when it comes to expressing generalized needs. Good point.

    But taking advantage of what is already being offered is very important for the advancement of our community as a whole. Wider spread of knowledge and involvement, less demonizing and complaining. (although I without the right to complain as much as I wish, lol)

    Phew, I hope that this all sounds objective, fair, balanced and level-headed. :)

  8. Diane!

    Thanks for your comment. Great example with Jonas Salk and the polio vaccine. I watched a show last night on PBS which discussed vaccinations in general, communicable diseases (including polio) and herd immunity, and activist patient groups who are NOT having their children immunized. Some are skipping vital vaccines, including polio vaccines, because they believe that the disease not longer exists. Can you imagine if polio resurfaced just because the next generation is unvaccinated? That would be a damn shame.

    Now onto the more specific topic at hand. Yes, the offers being given by pharma companies likely do not directly help patients to live better lives. I do appreciate the frozen gel packs because I use them in the summer to survive. I've only managed to attend one Women's Breakfast sponsored by the local NMSS chapter, but at that event I got to speak with a research director at NIH. That was nice.

    It does seem that MS takes a back seat to other 'more popular' diseases such as cancer or diabetes. Certainly that can make all of us angry. There is such a great need for many things, including ways to improve our situations and lives. But how to do that?

    This is where our voices need to be heard, and absolutely, we need more ears to be listening!

    Thinking back to Salk, I believe that research protocols have changed significantly since the time he was figuring out polio. I wonder, if he had to conduct research now, just how long it would take and what obstacles there would be along the way.

    This is where groups like the "Where are the cures?" as started by the Myelin Repair Fdn come in to help spread the word on improving research models. And we have to admit that Justine at the Myelin Repair Fdn has done a GREAT job in spreading awareness and support of their organization through online social media interactions.

    Interesting thing is that Justine Lam traveled into other online communities to get to know individuals. She didn't just set up something on their website at the beginning and just expect people to discover them and come interact.

    I think that more companies and organizations need to do just what she had done over the past 2 years. It does make a difference.

    I don't think that she asked "what do the patients want? let's survey them first." I believe that she approached it as "I know this is what we can do and let's get out there and make it happen!" I respect that.

    And thank you for the vote of confidence in dealing with "all those caring (cough cough) representatives." LOL :)

    I aim to stay courageous and calm in most situations.