By Alexandra Remmel
I officially started at GMHC 18 years ago in the blizzard of 1996. The job was part of a life change. After 15 years of me volunteering one night a week at the New York Presbyterian Hospital Emergency Room at the beginning of the AIDS epidemic, my husband asked if I wanted to change careers. Then I could incorporate what I so obviously enjoyed into the next phase of my career. He was correct. I went back to school and obtained my Masters degree in Health Care Advocacy from Sarah Lawrence College. After an internship in the Health Care Advocacy Unit at GMHC, I was hooked. Health Care Advocacy helped people receive access to care and insurance. While there has been a lot of change I am still with a fabulous Advocacy Unit, helping people navigate their health care options and access benefits. Someone asked how I handle the stress. It is simple - The clients and the staff have taught me so much over the years and given me back way more than I have provided.
In 1996, HIV/AIDS was still an uncontrolled monster. Procedures were not finalized so we, the advocates, could lobby the insurance companies and the doctors to have treatments funded. One client in 1996 had CMV retinitis, a potentially blinding eye condition. He needed a special process to be done, an implant in his eye, and it was not fully funded by his insurance. The process was still under review. A tentative code had been assigned by Medicaid, but the insurance company did not want to pay for it. I wrote letters and made calls, working closely with the doctor who wanted the client to have the needed implant covered. We succeeded. That client and I are still working together on other issues.
Also in that year, another client came in who barely had the strength to stand. Reuben in Intake called me so we could help ensure his care was paid for. He needed to be on COBRA from his job to continue to see his doctor and stay in treatment. His energy level was non-existent so we needed to be very hands on. While he had insurance, there were problems having his COBRA paid for, and his access to care maintained. He had lost his job and had no expectation of getting another one. During his medical care, which was successful, he rethought what he wanted to do so he could be active yet not jeopardize his health. He started volunteering in a different field and has found a completely different life.
Not all the clients I have worked with have survived, but those that have gone on are still with me, albeit more quietly.
In recent years, we have had a number of clients who work and then lost their jobs either due to the economy or due to their health. A number have thought they could not continue their insurance because they could not afford it and came to see me and my team about alternatives. Not everyone has known about ADAP, (AIDS Drug Assistance Program), which will pay for private insurance. It is a flexible program that has been an integral part of accessing health care here in New York. Regardless of a client’s previous salary, if they are on unemployment, they meet ADAP’s financial criteria. We help them assess the rest of the eligibility criteria, but more often than not I am able to give good news to someone who has just received a harsh blow. ADAP is also good for a newly diagnosed person while working out next steps. Their sensitivity towards the clients has been a very useful thing in a time of concern.
The people we work with are learning how to survive and cope with their diagnosis while the systems around them are changing. I have had to learn as well. Medicare Part D began on January 1,2006. Medicaid Managed Care was rolled out over 10 years and now the Affordable Care Act is underway. We have learned along with our clients and created networks at other agencies, as we all try to provide services. Some of clients and I reminisce over Medicare Part D or compare it to the new changes. Again that kind of perspective provides both me and the client support. Usually we never thought that we could laugh over a difficult issue while we were experiencing it.
Now I spend a lot of time counseling people on how they can return to work without risking their benefits or causing an overpayment which is quite a development after 18 years. Full-time work may not be an option for everyone but the possibility of more education can be, which I find very rewarding.
Working here in the Advocacy Unit at GMHC has been a wonderful experience with many highs and lows. I have grown in the process, utilized unexpected skills, and further honed my “nagging wife and elder sister” qualities. The hardest thing I have had to learn is that I cannot make someone do something. I can inform and make sure that the client is aware of the options, but the choice of the next step is not mine.
Lastly, I became a member of GMHC’s Consumer Advisory Board (CAB) at their invitation which has been a major compliment that I appreciate. This group advocates for the clients’ concerns which are shared at the monthly meeting. The CAB also educates clients about upcoming changes internally and externally. The monthly meeting is an open arena to discuss issues that I as a member can participate in or learn from which allows me to grow.