Monthly Archives: December 2015

There’s Got to Be a Morning After

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.

HIV/HCV Co-Infection Watch

HIV/HCV Co-Infection Watch

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.



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World AIDS Day: Shedding the Stigma of the Scarlet ‘Plus’

By Marcus J. Hopkins, Blogger

As an HIV and STD/STI educator, one of the most important messages I try to convey to people is that a virus doesn’t care about who you are – it doesn’t see age, race, sex, or social, political, or financial backgrounds. HIV can happen to virtually anyone, excepting the incredibly small minority of people who are believed to have partial or complete immunity to HIV (less than 1% of the world’s population), and as such, we should all take ownership of how we protect ourselves against infection.

More importantly, we should recognize that, because anyone can become infected with HIV (and other STDs/STIs), awareness, education, and protection are not just important for certain demographic groups, but for everyone. HIV is no longer a problem that affects just the “Four-H Club” – Homosexuals, Heroin users, Hemophiliacs, and Haitians – it is now a global issue, and no society or subculture is left untouched.

A pattern that I’ve noticed, over the last ten years of educating people about HIV, is that younger generations are becoming less and less “disturbed” by disclosure. The stigmata that have been borne by nearly two generations of people living with HIV are slowly eroding, as the disease becomes more manageable, the treatments more easily tolerated, and the physical manifestations less severe.

This is due in no small part to the existence of World AIDS Day. Founded in 1988 by the World Health Organization (WHO), World AIDS Day strives to bring awareness and education about HIV, as well as an opportunity to remember those whose lives have been lost, in an effort to “[Get] to Zero.” “Getting to Zero” has been the World AIDS Day theme since 2011, and though the number of new infections has largely plateaued, more recent pre- and post-exposure regimens and better Anti-Retroviral Therapies (ARTs) are bringing us ever closer to that goal.

But, we must not allow ourselves to become complacent. One downside of normalization is an accompanying lack of a sense of urgency from younger generations who have simply come to expect this as a part of their world. Unless they have direct experiences with the disease, most of them aren’t treated to the same types of exposure those of us who lived through the 80s and 90s “enjoyed” – they no longer see the wasted bodies of AIDS patients; they don’t hear of families abandoning their suffering relatives, leaving them to die alone; they can’t remember a time when being diagnosed with HIV essentially served as a death sentence. For this generation, the threat from HIV is largely about the inconvenience of having to take a single pill at the same time, every day – and with longer half-lives for those medications, even THAT isn’t a necessary requirement.

Part of the reason I have become so invested in Hepatitis C (HCV) education and research is the result of three decades of work done to erase the stigma of HIV. Is there more to do within the realm of HIV? Absolutely. That said, there are literally millions of people out there who are carrying that banner, and are doing so proudly and to great success. The same cannot be said for the realm of HCV awareness.

When I was first asked by the HEAL Coalition to head up a blog about Viral Hepatitis (including HIV/HCV co-infection), I really wasn’t terribly aware of the burden faced by those living with both diseases. Having never been affected by HCV, I was ignorant of even the most basic statistics related to the disease. I was unaware that treatment for the disease had long been one of the most dreaded regimens in medicine, and my only real exposure to it consisted of my doctor screening me for it, each year.

My first HEAL Blog entries came shortly after Sovaldi (Gilead) and Olysio (Janssen) hit the market, and most people were just becoming aware of the high price tags associated with those drugs. One of my first bits of research involved contacting Gilead’s Support Path Patient Assistance Program (in 2013) to find out how the application process and coverage assistance worked. It also allowed me to see that PAPs were an excellent alternative source of treatment funding about which few providers and even fewer consumers seem to know.

HIV/HCV Co-Infection Watch

HIV/HCV Co-Infection Watch

With the inception of the HIV/HCV Co-Infection Watch at the beginning of 2015, I really began to get a good sense of how the coverage landscape was going to be changing for people with lower incomes, specifically those relying on the AIDS Drugs Assistance Program (ADAP) or Medicaid for coverage. Newer medications were proving too expensive for the programs to afford, and as such, these patients had limited access.

When we first began releasing the Watch in January of this year, only seven ADAP programs offered coverage for Sovaldi and/or Olysio – California, Colorado, Hawaii, Iowa, Massachusetts, Minnesota, and New Jersey. Since that time, four new treatment regimens have been introduced to the market, and thirteen ADAP programs now offering expanded coverage for many of those drugs (fourteen, if you include the ADAP Insured plan in Louisiana). This is a relatively major expansion in the world of coverage, especially for drugs with such high prices.

The importance of programs like the HIV/HCV Co-Infection Watch is that they track information for public distribution, and make certain that those who are interested and able have the tools they need to bring about change in their own states. It is in this interest that the HEAL Coalition and the Community Access National Network presents its first HIV/HCV Co-Infection Watch infographic, detailing HCV drug coverage for ADAP programs in the United States.

To download the infographic, CLICK HERE.

This infographic specifically addresses which states offer coverage for HCV treatments, which do not, and which territories have yet to respond to information requests. The maps provide a simple overview of the states whose programs offer coverage, require prior authorization for coverage, and refer their clients to PAPs if they are denied coverage under their program. We are more than pleased to offer this infographic as a tool for furthering the discussion of HCV coverage in the United States. (Editor’s Note: The State of Coverage for ADAP includes the following: Red – States Offering No HCV Coverage; Yellow – States Offering Basic HCV Coverage (No Sovaldi, Olysio, Harvoni, Viekira Pak); Green – States Offering Expanded HCV Coverage; Blended – States Offering Multiple Coverage Levels; and Unknown – States With No Data)

On this World AIDS Day, let’s each do our own part to further the discussion of HIV and HCV with our friends, neighbors, peers, and loved ones. For HIV, we have prevention; for HCV, we have a cure.

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.

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