If you've just been diagnosed with HIV, the first thing you should do is visit your nearest ASO (AIDS Service Organization), introduce yourself, and ask for help. A list of ASOs in every state can be found on-line at: ASO Listings. Or, your state HIV/AIDS hotline should be able to give you the name and address of an ASO near you. You can find your state's hotline in our list of HIV/AIDS hotlines at HIV/AIDS Hotlines.
If you're going to need a lot of help for a long period of time, an ASO may assign you a "case manager." (Some ASOs assign all their clients a case manager.) If you're coping well on your own but need a little help with specific problems, you may work with a "benefits counselor." A good case manager or benefits counselor can be a real financial life-saver! All the things that seem so frustrating to you are just "part of the job" to them. They know how to fill out the forms. They know who to call. They know the difference between how a program is supposed to work and how it really works. Find a good one and he or she will make your life a lot easier!
Here are some of the options available to you for paying for your HIV care.
The first option for paying for your HIV-related health care and medicine is health insurance. Unfortunately, very few people have insurance that covers both HIV and their HIV prescriptions. Many companies today are "self-insured," and those companies may exclude certain expensive disorders from coverage-including HIV. Also, although your health insurance may cover HIV treatment, it may limit coverage for prescription drugs, which will be by far your biggest expense.
If you have good insurance, consider yourself fortunate. Paying your co-payments and deductibles may take a chunk out of your income. But with health insurance paying the lion's share of your medical costs, you can keep working, moving up the career ladder, saving for retirement and building your future.
If not, you have other options.
If you do not have prescription coverage and your income is relatively low, you may be able to get help paying for your medications through ADAP-the "AIDS Drug Assistance Program." ADAP is federally-funded as part of the Ryan White CARE Act. But, it is state-administered, and the federal funding for the program is determined by the number of documented AIDS cases in each state. The qualifications for ADAP and the drugs the program covers vary WIDELY from state-to-state!
Disability and Medicaid
If you are unable to work because of HIV or HIV-related problems, you may be able to collect from your private disability insurance or qualify for Supplemental Security Income (SSI) from Social Security.
Years ago, people with HIV were automatically assumed to be "disabled." Now, of course, they are not. But since issues like fatigue, depression and even diarrhea are very difficult to disprove, you can probably be "disabled" by HIV if you need to be. Don't jump at it if you have other options! Disability becomes a trap that many people have a hard time getting out of!
When you go on disability, you may get cash income from Social Security, depending on how much other income you receive and what you own. But it's slim pickings! To find out how much you may receive, contact your local Social Security office.
Qualifying for SSI usually also qualifies you for food stamps and-more importantly-Medicaid (which is called Medi-Cal in California and has different names in some other states as well.) Medicaid is a lifeline to HIV care for approximately 50% of people living with HIV (and 90% of HIV-positive children.) Medicaid pays for inpatient and outpatient treatment, home health care, prescription drugs and medical supplies.
If you're relying on Medicaid or plan to, ask your local ASO for help from a case manager who has experience dealing with your state's Medicaid program. It's complicated!
If you've been getting Social Security disability benefits for 24 months (or, if you are over 65) you may be eligible for Medicare, which is an entirely federal program. Part A (which is free-of-charge for most people) pays hospitals for treating you. Part B pays doctors to see you. Part B currently costs $96.40 a month for most people (more for those with high incomes). More information is available on-line at: medicare.gov
If you are a veteran of active duty in the U.S. Armed Services, you may be eligible for health care from the VA. Full information is available at: va.gov
Patient Assistance Programs
The pharmaceutical companies that manufacture HIV medications have "patient assistance programs" that provide free or low-cost drugs to people who could not otherwise afford to pay for them. Each program has specific criteria about who is eligible and what kind of help they will receive. Details differ greatly between programs. Most of them require that your doctor make the call. A list of phone numbers for the most commonly-prescribed HIV medications is on the Internet at: needymeds.com
Partnership for Prescription Assistance
A relatively new organization, the Partnership for Prescription Assistance, offers a single point of contact for 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. You can contact them at 1-888-477-2669 or on-line at: pparx.org. The Partnership for Prescription Assistance will never ask you for money for their services or the medications you receive.
In almost every large community in the United States, there are additional resources available to you, including free or sliding-scale clinics, organizations that offer free or sliding-scale complimentary treatments like acupuncture and massage, and more. Your local ASO is usually your best source of information on local and community-based resources like these. All you have to do is ask!
Copyright 2018, Positive Health Publications, Inc.
This magazine is intended to enhance your relationship with your doctor - not replace it! Medical treatments and products should always be discussed with a licensed physician who has experience treating HIV and AIDS!