Paying For HIV Treatment and Medications

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It's a good question. It's an important question. And because in some cases there are a lot of options, you need to become educated. Remember that affordability is important to begin your regimen but because that regimen is going to keep you alive and well indefinitely, you have to look as far as you can down the road too.

Because, thankfully, there are so many payment and assistance options, we've dedicated this 16th Annual Financial Guide to most if not all of those options currently available. The biggest portion of this guide is dedicated to the AIDS Drug Assistance Programs (ADAP) for each state.

The ADAP listing for individual states is so important because it offers assistance to many people who are HIV-positive and have nowhere else to turn for life-saving treatment. ADAP is funded federally but that doesn't mean that it is equal for all states. On the contrary, it varies widely in some states so our listing here is important for you to look over to see if what you need is covered and if you qualify in your state - or a state you might be moving to in the near future. 

Becoming educated as to your options means being a good student but it helps to have a good teacher. 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 also find a listing of state hotlines by going to our website: www.hivpositivemagazine.com/hotlines.html.

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." 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. And, these days, most are as up on the ACA, health care marketplaces and exchanges as any ACA insurance advisor. 

You can also check in with an ACA insurance advisor. They are paid by the insurance companies and should be aware of all the marketplace options available for you. Make sure you are up-front with them about you HIV status, otherwise, you could get into an insurance plan that will be very expensive for you.

The more you know personally, the more empowered you’ll be to take charge of your own financial and coverage situation. 

Know The Options

Health Insurance

 
The first place to look for assistance to pay for your HIV-related health care and medicine is health insurance. Previously very few people had health insurance that covered both their HIV treatment and their HIV medications. Insurance companies excluded certain disorders and put limits on other expensive disorders – including HIV.

The Affordable Care Act (ACA-or-Obamacare) has made available insurance coverage for millions of uninsured Americans. Before the ACA was signed into law, insurance companies could deny coverage to someone on the basis of pre-existing conditions like HIV. After being challenged, 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 can be complicated and vary state-by-state. As an example, health insurance companies place their coverage, deductibles and prescription plans on “tiers.” The patient’s cost depends on the tier in which the drug has been placed. The tier structures of HIV drugs then, are very important as to the affordability of the plan and drug. In 2014, a study commissioned by PhRMA (Pharmaceutical Research and Manufacturers of America) and carried out by Avalere Health surveyed 123 insurance plan formularies (drugs covered) and found that in 26%-to-39% of the plans (varying by four drug categories) HIV drugs were amongst the highest tier co-pay at 30%-to-40%. The findings basically asserted that these insurance carriers are continuing to exclude high-risk groups (and not just those with HIV) by making their insurance plans unaffordable. The good news is that at least 61% aren't playing that game - but you need to be aware of the plan you're choosing so you're covered for the meds and services you require. 

Most metro areas and states have ACA advisors that are paid by the health insurance providers and can help you make the best choice for you. Https://www.localhelp.healthcare.gov/ might be of assistance in finding a nearby advisor for you. Also, your local ASO will have professionals that will be as knowledgeable as anyone about the most acceptable plans for you and exchanges so if in doubt, give them a visit.


AIDS Drug Assistance Program (ADAP)

 
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! 

According to the National Alliance of State and Territorial AIDS Directors 2016 Annual Report:

• ADAPs served over 139,000 clients in June 2015, representing a 5% decrease overall from June 2014.
• Twenty (20) ADAPs reported increases of 5% or more clients served between June 2014 and June 2015 while 16 reported decreases of 5% or more in the number of clients served between June 2014 and June 2015.
• Among the 20 ADAPs that reported increases in the number of clients served of 5% or more between June 2014 and June 2015, half of those are states in which Medicaid eligibility has not been expanded.
• Total ADAP drug expenditures were $130,921,720 in June 2015.

ADAP continues to be financially strained and always at the mercy of both state and federal budgets. Although waiting lists decreased in most states from an all-time high in 2011 some wait lists may exist in certain states. Look at the ADAP list that follows for your state to check on the waiting lists and qualifiers.


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 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.


Medicare

 
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 $121.80 a month for most people but can be as high as $389.80 for those with higher incomes. There are also Prescription Drug Plans through Medicare (Parts "C" and "D") where fees also vary according to income. For drug formularies and more information, it's online at: www.medicare.gov.


Veterans Affairs

 
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.


Patient Assistance Programs

 
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.com. You can also access HIV Positive! magazine's Treatment Guide at: www.hivpositivemagazine.com/meds.html. Each drug listed has a "Financial Assistance" link if there is assistance available.

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.


Partnership for Prescription Assistance

 
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.


Other Options

 
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.

Read more articles from HIV Positive Magazine, here.