Questions about Health Reform? Question the Spin..

This was originally written for a blog at www.positivelyaware.com, specifically for HIV-positive people, but was not able to be posted there. It’s my hope that many people living with other diseases and “disease group” organizations may find parallels that are relevant to them and their constituencies.

A new website, http://www.hivhealthreform.org, that claims to “educate people with HIV and service providers” about the Patient Assistance & Affordable Care Act (ACA) has been created by Project Inform. The AIDS Foundation of Chicago (AFC) and Treatment Access Expansion Project/Harvard Law School Center for Health Law and Policy Innovation (TAEP) were partners in the project. A noble goal, I suppose, and I tip my hat to anyone who attempts to explain the complicated, uncertain, and inadequate provisions of the ACA.

In early 2008, I was invited to participate in the Obama campaign’s health care policy committee, which consisted of hundreds of medical providers, consumers, academics, and health care industry people. I eagerly accepted, thinking it would be an opportunity to promote what I believed was Obama’s vision of an American single-payer system. During the months of ridiculous “conference calls” of committees and sub-committees, I met many people (mostly doctors and nurses), who believed, as I do, that single-payer is the only way. Unbeknownst to us at the start, this committee was not about ESTABLISHING policy, but about how to “sell” the policy that had already been established by insiders who seemed concerned only with how likely it was to get passed. After eight months of frustration, I withdrew from the fray, though I was (and still am) an Obama supporter.

Evidently, someone who’s good at selling an odious product has stayed on and somehow gotten the HIV community to buy into the fantasy that A) this law will be allowed to stand, be funded, and get implemented as written, and B) it will solve many of the problems HIV-positive people have today gaining access to care and treatment. I haven’t bought it, so it was with admittedly cynical interest that I checked out the website and was disturbed by what I read.

There was a time in AIDS history when medical providers believed it wasn’t safe to touch, or even be around, a person with HIV without gloves and masks; when mothers didn’t want their children going to school with Ryan White; when newly diagnosed patients were told they would soon be dead. Ignorance still exists today, fueling stigma and discrimination, but thankfully, FACTS have prevailed over myths and medical advances have done away with the death sentence.

Evidently, there is a need to challenge what is being told to us about the ACA and dispel the myths, so here’s my attempt. Below are statements taken directly from the website and my challenge to their veracity and/or completeness.

Insurance companies can no longer deny coverage to children because of their HIV or AIDS or any other pre-existing condition. The only problem is that the day after this provision went into effect, most of the major insurance companies decided not to sell coverage for children at all or raised premiums for children with pre-existing conditions out of reach of most families. This has left HIV-positive children (and their parents) rolling the dice as far as private insurance is concerned.

Insurers cannot rescind coverage for adults or children except in cases of fraud or intentional misrepresentation of a material fact. And who determines “fraud or misrepresentation of a material fact” (such as claiming to have no pre-existing conditions when you had mono in high school)? The insurance companies themselves?

Insurers can no longer impose a lifetime dollar limit on essential health benefits. This one is true…until they figure out a way to wriggle out of it.

AIDS Drug Assistance Program (ADAP) benefits are now considered as contributions toward a Medicare beneficiary’s true Out of Pocket Spending Limit for drug coverage, a huge relief for low-income beneficiaries living with HIV and AIDS because it helps them move through the “donut hole” more quickly. True, unless they live in a state where they’re put on an ADAP waiting list or where other eligibility requirements, formulary changes, or “cost-sharing” measures have gone into effect, restricting or denying them access to their meds. And only true if Medicare survives the relentless Republican attacks on it.

These changes will begin to help people living with HIV/AIDS find—and keep—health insurance. Insurance, sure. But what good will that do if the deductibles, co-pays and co-insurance are so high that they can’t afford to go to the specialized doctors they need or pay for their meds? Insurance does not equal care.

In 2014, the Affordable Care Act will ensure that Medicaid coverage is available to all low-income Americans – including adults with no children – with income below 133 percent of the Federal poverty level (about $14,500 for an individual and $29,700 for a family of four) wherever they might live. As a result, low-income adults living with HIV will no longer have to wait for an AIDS diagnosis to become eligible for coverage. Unless Congress repeals the law, fiddles with the FPL, refuses to fund this expansion, or does away with Medicaid altogether. UPDATE: On March 10, the Congressional Budget Office (CBO) released a report stating that “compared to a year ago, the law is now anticipated to cover two million fewer people but cost $50 billion less over 10 years, after factoring penalties paid by individuals and businesses that don’t get or provide healthcare coverage.” Another report was issued by the CBO on March 15 stating that “As many as 20 million Americans could lose their employer-provided coverage because of President Obama’s healthcare reform law.” The CBO is a non-partisan agency that continually reports on the cost of legislation and I suspect this is just the beginning of the dismantlement of the first rosy estimates of the cost benefits of the ACA. 

Insurers will not be able to deny coverage or charge more for anyone who has a pre-existing condition, like HIV/AIDS—or impose annual dollar limits on essential health benefits. This provision does not go into effect until 2014. Even now, the debate on what constitutes “essential health benefits” has begun with insurance companies devising arguments against covering more expensive procedures and treatments, even when doctors recommend them over less costly measures, as well as arguing that an insurance agent’s commission should be included in the medical loss ratio – the 80% of their income that they’re supposed to pay for actual medical care. It seems unlikely that this will make it all the way to 2014 and even if it does, the insurance companies could certainly decide, as they did with kids who have pre-existing conditions, not to provide coverage at all for specific diseases.

People without access to employer-sponsored insurance or Medicaid will be able to buy private coverage from Affordable Insurance Exchanges, which are designed to make buying health insurance easier and more affordable. And people with low and middle incomes will have access to Federal premium tax credits that will ensure that this coverage is affordable for them. The problem here is that A) you still have to buy insurance, not care, and B) as we’ve already seen with the “high-risk pool” insurance offered by the states, it most certainly is NOT affordable with average monthly premiums being higher than a car payment (most start at around $250 for a single man under age 24 – in some states, women are more expensive) and for some, rent or mortgage payments (anyone above age 60 must pay over $1,000). Those who decide what is “affordable” are rarely the ones who can’t afford to pay the prices they set. Lastly, where is the money going to come from for those “premium tax credits” that will supposedly ensure “affordability” for people? Think Republicans will allow that?

The Affordable Care Act also gradually closes the gap in Medicare’s prescription drug benefit known as the “donut hole.” This will give people with Medicare who are living with HIV and AIDS more resources to pay for life-saving medications. For example:Medicare beneficiaries who reached the donut hole in 2010 received a one-time rebate of $250.
A laughable amount in terms of HIV medication, not to mention other drugs that HIV-positive people might take for cholesterol, diabetes, insomnia, depression, blood pressure, heart problems, seizures, digestive problems, kidney and liver disease, bone problems, or anything else that might crop up.

In 2011, beneficiaries who reach the donut hole receive a 50% discount on covered brand-name drugs while they are in the donut hole, a considerable savings for people taking costly HIV/AIDS drugs. Perhaps, but co-pays could still make access problematic and let’s face it, 50% will still be too much for many.

Those discounts for brand-name and generic drugs will grow over the course of the decade until the donut hole is closed. Sure, just like the funding for ADAP will grow to meet the need or Medicare and Medicaid will remain intact and well-funded.

As noted above, ADAP benefits are now considered as contributions toward a Medicare beneficiary’s true Out of Pocket Spending Limit for drug coverage, a huge relief for low-income beneficiaries living with HIV and AIDS because it helps them move through the donut hole more quickly. See above. And isn’t it just a possibility that that Out-of-Pocket Spending Limit will be raised, just as co-pays and deductibles have been?

It’s one thing that organizations in the HIV community have trust and faith that the “reform” will do all the good things mentioned on the website. But what happens if Congress repeals some or all of the law? What if Congress succeeds in destroying Medicaid and Medicare? What if Republicans gain control of the House and the Senate in 2012 and decide not to fund Ryan White anymore? And what about people who aren’t HIV-positive but struggle with costly diseases of their own?

Yeah, it’s that “Plan B” thing again. We don’t often get such a clear and present opportunity for foresight. If we don’t have a back-up plan for when this law fails (and it will fail), we’re as stupid as people who say global warming is a hoax (I say on an 80-degree day in MARCH), so there’s no need to regulate polluters. But I guess that’s fitting—Republicans, at least those attending recent debates, seem to want to kill off people as well as the planet.

If you aren’t any more inclined to sit still for it than I am, ignore the “spin,” investigate the facts, challenge untrue or incomplete statements, talk about the truth, tell your story about how the reform affects you (or doesn’t), and go to Washington on October 6, 2012 to join the Demonstration for Universal Healthcare. If you’re living with HIV, care for someone who is, or are a medical or service provider, this is the HIV community’s DUH moment. Help make it America’s too.