For HIV Treatment and Medications
One of the first things that crosses your mind when you’ve been diagnosed with HIV or when your doctor decides it’s time for you to begin treatment is: “How am I going to pay for this?”
HIV medications and treatment, while lifesaving and absolutely essential, are very expensive and a life-long expense – adherence to your regimen (taking your meds without interruption) is key.
Fortunately, as with the evolution of HIV medications, ways and options to pay for your treatment has evolved too. Depending on the route you take and what you might qualify for, getting the assistance you need may be complicated so it pays to start looking at your options early – even before you need to begin taking meds if you have that opportunity.
One other aspect to keep in mind is that the funding landscape, especially with federal and state funded programs (ADAP and Medicare) and also insurance with the Affordable Care Act, is constantly changing. Even if you have been on HIV meds a long time and are going through a life change like retirement or moving to another state, you’ll want to make sure that you’re meds and treatment are covered.
The first step you should take in the process is to visit an AIDS Service Organization (ASO) in your area or call one in an area you’re moving to. There is a listing of ASOs across the country online at our website: www.hivpositivemagazine.com/aso.html. Or, your state HIV/AIDS hotline should be able to give you the name and address of an ASO near you. You can find a listing of state hotlines also by going to our website: www.hivpositivemagazine.com/hotlines.html
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. Finding a good one will make your life a lot easier!
The first option for paying for your HIV-related health care and medicine is health insurance. Previously and currently, very few people had health insurance that covered both their HIV treatment and their HIV medications. Insurance companies exclude and put limits on certain expensive disorders – including HIV.
Coming right around the corner however, in 2014, the Affordable Care Act (also known as ObamaCare) will provide new insurance coverage for millions of uninsured Americans. Before the ACA was signed into law (and upheld by the Supreme Court last June) insurance companies could deny coverage to someone on the basis of pre-existing conditions like HIV. The Supreme Court’s decision to uphold the “Individual Mandate” portion of the ACA was a victory for people living with HIV who had previously been shut out of the health insurance market.
These changes to the health care system and insurance are complicated, vary state-by-state and will no doubt have some bumpy roads to implementation but they should be worth the troubles. Your local ASO will have professionals that will be as knowledgeable as anyone about the changes so if in doubt, give them a visit. For more information about the ACA, check out our article from October of last year at www.hivpositivemagazine.com/Ask_Anne_Affordable_Care_act.html.
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.
According to the National Alliance of State and Territorial AIDS Directors National ADAP Monitoring Project released in January of this year, in 2012, the ADAP budget exceeded $2 Billion for the first time and as of June of last year, was serving almost 150,000 individuals.
ADAP is still financially strained and at the mercy of both state and federal budgets. Although waiting lists decreased in most states last year from an all-time high in 2011 some wait lists exist in certain states. Look at the ADAP list that follows for your state to check on the waiting lists and qualifiers.
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 and getting more so! The Affordable Care Act (ACA) also affects Medicaid. The ACA cleared the way for all states to expand their Medicaid programs although some states aren’t willing to do so, which could shut out low-income individuals to access to health care coverage. The good news is that many states are expanding their Medicaid programs.
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 online at: www.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: www.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: www.needymeds.org.
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 under funding.
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 online 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!