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.
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.
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 HowIFightMS.com.
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?
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?