Treatment and Medications
You probably know that HIV medications are very expensive. How does the average person pay for them?
The answer is that there are lots of resources available to help you pay for your treatment and medications. The poorer you are, the more help is available to you. So donít panic! Youíre going to be fine.
But, getting the assistance you need can be complicated. So, 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 counselorcan 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 issupposed to work and how it really works. Finding a good one will make your life a lot easier!
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 a federal program, established as part of the Ryan White CARE Act. But it is administered by the states, and funded by both the federal government and the states. The drugs the program covers vary widely from state-to-state, and so does the amount of money you can earn and still qualify for help! Because ADAP is so important, and varies so much from state to state, we have devoted most of this Financial Guide to a listing of the ADAP formularies and qualifications for each state.
Beginning in 2010, mostly due to the financial crisis, some states began lowering eligibility criteria – stranding people previously ADAP qualified, reducing formularies, capping enrollment or instituting spending caps, all in an effort to save money yet ultimately save the program. According to the American Academy of AIDS Medicine, in June of this year, approximately 2,109 people in 9 states were on ADAP waiting lists.
In July, Health and Human Services (HHS) Secretary Kathleen Sebelius announced an addition of $80-million in grant money, $69-million of which is earmarked for ADAP with the intent of eliminating the waiting lists in all states. While these grants may not be immediate, check with your ASO or state ADAP to see about changes taking place in your state.
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 possibly 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 not much! 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 $115.40 a month for most people (more for those with high incomes). More information is available on-line at: medicare.gov. 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. va.gov
All of 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. A list of phone numbers for the most commonly-prescribed HIV medications is on the Internet at: needymeds.com.
The drug companies’ patient assistance programs have become extremely important in this era of budget cutting and tight money. The drug companies have picked up the slack for thousands of people with HIV who cannot get help from ADAP because of
The Partnership for Prescription Assistance offers a single point of contact for 475 public and private patient assistance programs, including almost 200 programs offered by pharmaceutical companies. You can contact them at 1-888-477-2669 or on-line at: www.pparx.org. The services of the Partnership for Prescription Assistance are free.
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, yoga, massage, and more. Your local ASO is usually your best source of information on local and community-based resources like these.
Whatever you have to do to get the treatment and medications you need – do it! The process may seem complicated and frustrating. You may have to jump through some hoops. But, if you’re determined and persistent, you will find a way to pay for your life-saving HIV drugs – especially with the help of a good case manager.
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!