You can’t do it alone.
You don’t need to know everything. Find someone who does know, someone you trust. Some people are paid to help individuals in your position.
Wherever you live, the system is meant to frustrate you. Join a network of people living with HIV or their allies. Get help specific to your needs.
Communication is important, but remember, there are positive and negative aspects of communication.
If you don’t know what you want but you have an idea, just say it.
If you want a job, become a volunteer. You can impress people and learn about job openings. You might get preference over others. You can also protect yourself from isolation and depression.
“HIV is very much nestled in a biomedical focus. But the income that we have to live on and the realities of our everyday lives are essential parts of our health and well-being. We are embedded in a system of clinics and ERs, but the well-being that makes our survival worthwhile is more like the rehab center. Economic justice is a key theme.”
n Legal tips from various speakers:
No, you do not have to disclose your HIV to employers. Yes, your health care insurance information is kept confidential from your employer.
Legal eagles have said from the beginning, be careful about disclosing. Once the information is out, you may not only be discriminated against, but unable to prove it.
Employers can also check your social media. Think about what you want to make private.
Your employer does not know if you are getting help from ADAP (AIDS Drug Assistance Program). In addition to paying your drug co-pays, if you have insurance through your job, ADAP may be able to pay your insurance premiums, but only if the insurance can bill you directly. If the employer must deduct the premiums from your paycheck, ADAP cannot pay those premiums.
An audience member noted that the Veterans Administration may pay for whatever Medicaid doesn’t.
The Social Security Administration often gives answers over the phone that are different from the answers you get from going into their local office.
Always keep copies of the information you submit to your benefits office, even if it’s a photo taken with your phone. Keep the proof of any income you receive.
Keep your providers up to date on your functional limitations. This cannot be overstated. Otherwise, you may lose your social security benefits in a Continuing Disability Review (CDR).
You can work while collecting disability or social security payments. Go to Choosework.ssa.gov for a lawyer or other counselor to help with your specific circumstances. You can also ask around for help through your medical providers, Ryan White services, social security office, or LGBTQ organizations.
n Jessica Rhoades,
staff attorney, the Legal Council for Health Justice, Chicago:
“Everyone is confused, including attorneys. Talk to us as quickly as possible about any life change. We want to make sure you have the tools you need to go back to work and be healthy. Talk to someone who can help you with your specific needs. Everyone is different.”
Read the 2016 report, The Unintended Consequences of AIDS Survival, at tpan.com/unintended-consequences-aids-survivalUnintended_final.pdf.