Monthly Archives: November 2014

Elections Have Consequences

By: Marcus Hopkins, Blogger

Those of us in the healthcare advocacy, education, and provider community come from all political backgrounds, every set of economic circumstance, and every stripe of religious upbringing; what brings us together, as a community, is our shared belief that all people deserve access to education, information, and service, when it comes to their health. To suggest that all members of any one community feel the same or share the same opinions discounts the individuality represented by our multifaceted composition – even narrowing down a single, universally held belief would be little more than a fool’s errand.

Though we differ on many issues, most of us can agree that access to affordable, reliable healthcare services can help relieve much of the stress felt by everyone when they’re faced with issues regarding personal wellbeing. While we me disagree on how best to ensure that access is available, it is virtually impossible to find anyone who would argue that certain people should not have access to healthcare.

Even within the Democratic Party, whose campaign promises in 2008 included massive healthcare reform, there is much dissent over how that got implemented – the Affordable Care Act. Since its passage, the ACA has seen its fair share of bumps in the road – missed deadlines, Federal lawsuits, over 54 votes to repeal all or part of the legislation – despite several setbacks, the ACA has, to date, managed to withstand all attempts at unraveling.

C-SPAN image of the House voting to repeal Obamacare

Health Care Law Repeal

But, as our current president once reminded us, “Elections have consequences.”

For three consecutive election cycles, the Republican Party (whose membership have initiated all repeal votes, and whose candidates have consistently run on the repeal of Obamacare) has gained seats in both houses of Congress. Democratic candidates, whose political ideologies consistently trend center-right since the 1990s, have largely failed to either iterate or campaign upon the ACA’s successes, instead choosing to address the law only when pressed to do so.

This hesitation on the part of Democratic politicians to campaign on arguably the largest piece of healthcare-related legislation over the past thirty years, combined with Republican politicians’ and pundits’ vehemence that said legislation is akin to Fascism/Socialism/Communism/Nazism, and must be repealed immediately (with or without replacement legislation), has left many in the healthcare community largely unsure on many fronts.

There are many unanswered questions pertaining to the law as it’s currently implemented, further pending lawsuits regarding Constitutionality of certain provisions within the law, and now, the potential threat of a partial or total repeal at the start of the next legislative session have helped to foster an environment of uncertainty and a lack of confidence for both consumers and providers.

What does this mean for people living with HIV/AIDS and/or Hepatitis C? The honest answer is, “…Can we get back to you, on that?”

For better or worse, HIV/AIDS and HCV have consistently had champions on both sides of the aisle; pinning down which political party has been more beneficial to either or both communities is difficult to quantify, as with long-term, chronic illnesses, care is measured not only in sheer numbers (metrics that are verifiable, and help to guide policy), but in terms of the quality of the care provided (stories that can be largely anecdotal, and help to guide sentiment and sway votes). What we have consistently discovered is that, when it comes to healthcare, “stories” are better at getting legislation started, moving, and passed, while numbers are better at getting funding.

If this is the case, the outcome for HCV patients may be more in their favor. Current infection data indicates that a good majority of HCV infections (either new or existing) lie in lower income, yet heavily Republican-leaning districts and states. With numbers becoming more distinctly clear (as more data is collected and disseminated), advocates are in a better position to convince right-trending representatives that HCV is, in fact, an issue that affects their constituency, and that it will behoove them to act in the best interests of both their constituents and themselves.

For HIV/AIDS patients, even with the gradual decentralization of new HIV/AIDS diagnoses out of large metropolitan areas, the path can be less clear. In many states, HIV-related stigma still shapes much of the policy decisions, despite being outdated; in the minds of many non-infected people living in these lower-income, heavily Republican districts and states, HIV/AIDS may be seen as a personal failing, rather than a healthcare crisis.

That doesn’t mean, of course, that there are not HIV/AIDS allies on the right side of the aisle. Former Governor Tommy Thompson (R-WI) has long proven one of the most effective and staunch supporters within the HIV/AIDS legislative movement since the 1990s. Furthermore, HIV/AIDS funding saw its highest increase in funding under George W. Bush (much of which was allocated and appropriated for combating the illness overseas, rather than in the U.S.).

And so, I leave you with this advice:

Don’t worry; be cautious.

Close scrutiny must be paid in the coming years, if we are going to go about ensuring that all people living with HIV/AIDS and/or HCV have access to medical services and medications. But, we must remember that, if we want allies in Congress who will help us to reach the people most in need, we need to make certain that we don’t alienate them, right out of the gate.

Remember – some of our best-friends are Republicans.

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The Medical Catch-22: Marriage Equality

By: Marcus Hopkins, Blogger

The past four years have been, for many LGBT couples, exciting times – we’ve seen the expansion of marriage rights in 32 states (whether by court rulings, votes, or legislation), something that even a decade ago seemed a far flung ambition. But, as many of these couples are learning, with this newly granted access to legalized marriage, there could be some unintended consequences that may reshape the way both they and the healthcare advocacy community address access to healthcare.

For decades, couples have sought rights to marriage. In doing so, many of us who advocated for the right to legally marry rarely spoke of the legal ramifications that accompany that newly wedded status. While many couples may have already combined their finances prior to marrying, once the knot has been tied, those combined incomes can prove detrimental when attempting to purchase affordable healthcare coverage, and may outright disqualify certain people from accessing medications and treatments via various low-income assistance programs, such as the Ryan White Care Act, Medicaid, Medicare, ADAP, and various other Patient Assistance Programs (PAPs).

For over two decades, people living with HIV/AIDS have relied upon the assistance provided by these programs to treat their illness, receiving life saving medications to which they might not otherwise have access. With roughly 54% of the HIV/AIDS population living on incomes that fall slightly above or below the Federal Poverty Limit, these programs provide a vital service to those who are most in need.

These programs, however, often have relatively stringent income requirements that need to be met prior to gaining access – primarily, having an income that falls below certain upward percentages of the FPL (with an exact number being difficult to pin down, as it varies by state). For many people living with HIV/AIDS, there has long been the sad reality that, working too much will make medication (even with insurance) unaffordable, but working too little will leave them living lives of relative poverty.

This medical Catch-22 has been present in the HIV/AIDS community for the entirety the Ryan White Care Act’s existence; the difference between access to treatment can literally come down to dollars and cents, where even the slightest overage in income can leave someone without any viable options.

While realistic answers have rarely presented themselves on a Federal level, it was hoped that the expansion of Medicaid on a national basis would have eliminated many of those problems, shifting several patients from Ryan White over to Medicaid. However, as only 28 states have accepted the Medicaid expansion (or have received waivers for their own attempted programs), many patients were left in the lurch.

With further expanded marriage rights, some patients may find that their newly recognized legal status has effectively priced them out of the healthcare market – their combined incomes being too high to qualify, but not high enough to pay for coverage that allows for realistic co-pays on medications.

The Marriage Equality Map, July 2014

This may come as a shock to those who have come to depend upon these programs to gain access to treatment; the coverage they once relied upon, month after month, may no longer be available to them, once they file their Federal and state taxes, and have to report their spouses’ income, as well.

And that doesn’t even take the presence of children into account. Will minor children now be part of a “legal” family or “household?” With not every state offering (or having) expanded marriage rights, addressing these issues on the Federal level may be even more difficult.

What is troublesome, as someone who has seen what can happen when one “makes too much money” to be considered “poor,” is that there are no definitive answers, at the moment. Healthcare providers, professionals, and advocates (as well as the legal arm of this equation) cannot provide any solid answers, at the moment, because we are entering relatively new, and legally murky waters.

For sero-concordant and -discordant couples, the answers could be markedly different, as the costs for concordant couples will likely be exponentially more costly, with medications for both HIV and HCV being placed in higher tiers, meaning higher co-pays for both.

Right now, making any predictions would likely be a fool’s errand – how do we predict what we’ve not yet experienced? Unfortunately, while those of us in the LGBT community have much to celebrate, we must be cautious when moving forward into wedded bliss.

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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