By: Marcus J. Hopkins, Blogger
December 2015 marks the end of the inaugural year for the HIV/Hepatitis C Co-Infection Watch, and with the first year coming to a close I wanted to take an opportunity to look back on what the HIV/HCV Co-Infection Watch has accomplished, how the landscape for Hepatitis C (HCV) treatment has changed, and what to expect in the coming year.
There’s something exciting about beginning a new venture, and the HIV/HCV Co-Infection Watch certainly has proven itself to be a worthwhile, if not always clear cut, adventure. The HIV/HCV Co-Infection Watch was designed to be a patient-centric research effort, which at first took a while for me to wrap my head around; being from the world of case studies and scholarly research, switching gears to produce a document that isn’t laden with technical and medical jargon to make it more palatable for non-professionals is, ironically, more difficult than it seems. Because I’m familiar with the medical and scientific side of the treatment world, reading and understanding dense thirty- to forty-page studies is where I excel, and translating that into language that almost everyone can understand has proven taxing, at times, and I have to admit that I’ve not always done the best job at that.
From the very first monthly report, what the HIV/HCV Co-Infection Watch was trying to accomplish was a bit different. Yes, we were gathering information that other groups also gather – formulary and PDL coverage for HCV therapies; but, we were trying to find a way to put that information into a user-friendly, easily understood format. I believe that we’ve accomplished that goal with our formulary charts, using simple “Yes or No” answers and color coding to indicate the level of coverage offered by each state (Expanded Coverage, Basic Coverage, and No Coverage), with additional caveats and explanations where necessary. This allows patients and advocates – our target audience – to easily scan down the list to their state and find out whether or not coverage is offered, which has the added benefit of helping patients to better advocate for themselves, and gives both parties the ability to target their efforts to convince states to expand their coverage.
This aspect of our work is vitally important to someone like myself – for most of the past ten years, I’ve been ranked as “lower income” and have been eligible for the AIDS Drugs Assistance Program (ADAP), through which I’ve received my medications to treat HIV. I’ve also move twenty-three times in the past fifteen years, meaning that my living situation has hardly been what anyone would call “stable,” which is unfortunately a circumstance that many lower income HIV/HCV patients face. This type of resource (for HIV drugs) would have been invaluable to me, had it been available when I was moving between four different states and across the country, because I would have known if my regimen was covered by ADAP. As it stood, however, each time I moved to a new state, I worried about whether or not my medications would be covered under their program; I had to hunt for information about how to apply for coverage, and more than once, I found myself in a position of last-minute ditch efforts to get covered. I can safely say that, when it comes to one’s health, not knowing whether or not you’re going to get your medications is, without a doubt, “the worst.”
In the coming year, I hope that we are able to make the data we collect even more accessible to patients who find themselves rudderless in a sea of healthcare confusion. We’ve been discussing several ideas for how to make our report easier to digest, easier to follow, and more “user friendly.” Personally, I look forward to challenging myself to break out a bit more of my staid and a bit clinical writing style to help non-professionals find our product easier to understand.
One the treatment front, 2015 has been, perhaps, the most incredible year for patients living with HCV on record. Within the span of two years, not one, but six new treatment regimens have been approved and introduce into the market, all of which are far preferable to the poorly tolerated Pegylated Interferon-based treatments of yesteryear. This is medical progress that is almost unheard of in the field of pharmacy, and many kudos go to the companies whose research and development teams have produced such fantastic results. Perhaps the biggest issue with these drugs, however, was their affordability.
When we began the HIV/HCV Co-Infection Watch in January 2015, only seven ADAP programs offered Expanded Coverage for Sovaldi and Olysio; as of November 2015, thirteen ADAP programs have reported that they now offer Expanded Coverage for Sovaldi, Olysio, Harvoni, Viekira Pak, Daklinza, and/or Technivie. This number is expected to rise in the coming year, as more and more states find ways (and funding) to pay for these treatments, allowing co-infected patients the opportunity to access these life-saving medications.
On the Medicaid front, the Centers for Medicare and Medicaid Services (CMS) recently released new guidance on coverage for HCV drug coverage that may revolutionize the way that patients and providers navigate the Prior Authorization process. Again, this is a fantastic improvement, and the amount of work and effort done by groups such as the National Viral Hepatitis Roundtable and the Hepatitis Foundation International (as well as many other groups) cannot be overstated enough. These advocacy groups have worked tireless to ensure that everyone has access to these medications, and without their hard work, I shudder to think what the treatment landscape might resemble.
While it is unlikely that the costs of current and/or new medications will see a dramatic reduction over the coming year, increased scrutiny regarding the pricing practices of pharmaceutical companies, as well as the pricing agreements struck between manufacturers and payers, may result in eventual legislative efforts to reign in the increasing costs for healthcare, in general, and of medications, specifically. This can only mean good things for patients, whether or not it’s good for “business.” Healthcare, after all, should be about patients, rather than profits.
I want to thank all of the ADAP directors, coordinators, and staff members who have helped us to provide the most current, up to date, and frequently updated ADAP and Medicaid formulary database available, and I look forward to working to provide you with the best product possible in the coming year.
Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.