Back HIV Policy & Advocacy Falling Through the Safety Net: How the Afforable Care Act Helps People with HIV

Falling Through the Safety Net: How the Afforable Care Act Helps People with HIV


Over 25 years ago, one of the first demonstrations I ever attended was an action sponsored by SEIU in support of health care for all. I suppose back then I wasn’t sure how not having health insurance would impact me, because this was before I tested HIV positive. But at least I understood the very basic concept of good health maintenance, and knew even then that quality healthcare was unavailable to a lot of people.

On the occasion of the Supreme Court’s recent upholding of major features of President Obama’s healthcare law, known as the Affordable Care Act (ACA), I was reminded what a long slog it’s been to get to this point in the history of healthcare access in the U.S. And over the past year and a half -- having gone through the twisted maze of trying to find coverage for myself -- the Court’s decision was bittersweet.

For the past 24 years living with HIV, I have had consistent access to health insurance due to the fact that I have always been employed at jobs with a benefit package that included health coverage -- even at some of the smaller not-for-profits I've worked for.

Over the last year, however -- going it alone as an HIV education consultant -- I lost all connection to insurance for 2 important reasons: 1) I could not get my own individual policy due to the fact that I have a pre-existing condition; and 2) insurance plans that might have been available to me (i.e., COBRA, California high risk plans) were extremely expensive. There was no safety net for people in my situation.

One of the major frustrations I've faced is that I am an otherwise healthy HIV positive man who was suddenly thrust into the pool of people who cannot get insurance, thereby risking further illness and even hospitalization that would be on the taxpayers' dime. I have been in an endless struggle with Medicare for a little-known program and I am still waiting to see if I qualify.

The only healthcare I have received during the last year has been through a clinical trial I am enrolled in. I consider myself one of the long-term survivors of AIDS who is now at risk due to our scrappy system of healthcare coverage, despite my steadfast self-advocacy, knowledge, and connections.

But here is where "Obamacare" comes in. In 2010 a program under the newly signed ACA legislation called the Pre-existing Condition Insurance Plan (PCIP) was announced. Some states decided to implement it and others refused. Living in California, this is the program that will get me back into consistent healthcare coverage. PCIP now covers only about 11, 000 people. According to the California HealthCare Foundation, the program is underutilized because it is still too expensive, enrollees must stay in the program for at least 6 months, and many people are unaware that it exists.

The slow implementation of the ACA is already underway, although most people don’t realize it. At least for now, some people in some states have found a gold-threaded safety net -- expensive as it is -- that will give them coverage they need.

Granted, the ACA legislation is flawed, and gives too much to the healthcare industry and insurance companies, but it will be a godsend for people living with HIV simply because it expands coverage to those with pre-existing conditions. It also will close the so-called "donut hole" in the Medicare Part D out-of pocket drug coverage nightmare.

But for many people finding their way into these complicated and expensive programs with dizzying qualification criteria, the best option would be universal healthcare in the form of a single-payer system. Some advocates think a good way to implement universal healthcare is to open up Medicare to all. The progressive political group is calling for an expansion of Medicare, stating, "The Affordable Care Act is a good start and we must implement it, but it’s not enough."

Encouraged by the Supreme Court upholding the ACA's "individual mandate" -- though it ruled that the federal government cannot withhold existing funds to coerce states to expand their Medicaid programs to cover more low-income people -- advocates are continuing the fight for universal healthcare, even as Republicans threaten to destroy the ACA and its slow start to healthcare for all.

Matt Sharp is an independent HIV education and advocacy consultant based in San Francisco.