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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