I've been living with HIV for over 26 years, so health insurance is obviously something I've never taken for granted. Everyone with HIV understands the challenges of maintaining comprehensive insurance coverage. My situation is complicated but offers an instructive story of how complex health insurance system is for people with HIV, even under the Affordable Care Act (ACA).
Most of the years I've lived with HIV I've been healthy enough to work and so had health insurance options through my employers. But that coverage was spotty and constantly changing, never a good thing for a person with HIV who needs consistent health care.
In 2013, I became self-employed and had no health insurance. My COBRA had run out from my last job, and I was just over the lower income limit for any entitlement programs. I live in the Bay Area in California -- which has one of the highest tax bases in the country, with expensive real estate, food, and just about everything else. In my situation, I felt as though I was being punished for working and living with HIV. I made just enough money to support myself in an expensive city, but still did not make enough for health insurance. I was eligible for an early ACA insurance program in California known as the Pre-Existing Condition Insurance Program (PCIP.) The program was designed specifically for people with pre-existing health conditions. While offering me health insurance, the program did everything wrong, including a prohibitive deductible and high premiums. It became essentially a band-aid until I could apply for the ACA.
I had to cancel PCIP before the ACA health insurance marketplaces finally rolled out, because I simply couldn't afford it. I knew the ACA would take over in a few months and I was pretty sure all would be seamless. I had a lot to learn.
When I first looked at the plans offered by the ACA, they were confusing and far out of my budget. The "Covered California" website, which people here use to enroll in ACA plans, was a complicated mess. It was certainly not intuitive, nor user-friendly. The telephone support line only referred people to the online "chat" support, which disconnected me after hours of waiting. I faced an endless cycle of confusion and frustration.
And then, after finally enrolling in time for my coverage to start in January 2014, I discovered my HIV doctor was not using the insurance company I selected! This was not evident when I enrolled online, nor was there a place to research that. I knew I had to cancel my policy and seek another insurance plan that my doctor was using.
I was back to square one, very frustrated and disappointed. I had to go back to that daunting "Covered California" website. Finally I found the number for a local "navigator" who helped me to cancel my current coverage and re-enroll me in a plan my doctor accepted.
I was advised to select the "platinum" plan that was needed for someone managing HIV and several other illnesses. It was expensive -- a little under $1,000 a month -- with high co-payments. I may still face issues about which drugs are covered, out-of-pocket costs for specialty care, and high co-payments.
Luckily, I just barely qualify for California's generous state AIDS program called OA-HIPP (Office of AIDS Health Insurance Premium Payment). With the subsidy I get from the ACA, plus the premium assistance I get from OA-HIPP, I'll end up paying nothing for my health insurance. That's great for me, but people in my situation in other states may not be so lucky.
Ultimately, there is much that may change for the better with the ACA, including the promise that costs should go down as more people enroll. I can only hope that will happen. While I'm grateful to have my own health insurance despite having a pre-existing health condition, I'm dismayed over the complicated enrollment process and shocked at how expensive it's all going to be.
Make no mistake, having AIDS may make getting health insurance through the ACA more complicated. People need to be prepared for what they may experience. If you have not enrolled yet, get a case manager or "navigator" who can help make the process go more smoothly. Make sure you make copies of every document.
As advocates, we need to ensure that there is comprehensive care for people with HIV. Unfortunately, due to the Supreme Court ruling that allowed states to refuse Medicaid expansion, thousands of people with HIV will be left out of care. It is also unclear what is going to happen with the Ryan White CARE Program, which includes the all-important AIDS Drug Assistance Program. Wrap-around programs like Ryan White are essential to the complete HIV care we all deserve, and they must continue.
The ACA is not a panacea, but it is a good-sized band-aid. My dream is that one day we'll have single-payer health insurance in this country. Why should our health care be dependent upon rates decided by private insurance companies, the health care industry, and pharmaceutical companies? Unfortunately, unless we get a Congress that truly cares about our health, we may never see a single-payer system.