There are more than 1.2 million Americans living with HIV in the U.S. today, per the Centers of Disease Control (CDC). Although treatments now available for managing HIV are often effective in controlling symptoms and complications, continued employment depends on how advanced your HIV is and whether your disease has progressed to AIDS.
Treatments for HIV, while more effective today than in the past, are not without side effects, including nausea, fatigue, anemia, nerve complications, and insomnia, among others. Trying to work full-time while dealing with these side effects can be difficult if not impossible. HIV infection also severely compromises your immune system, leaving you vulnerable to frequent infections and at a higher risk of developing cancer and other life-threatening complications.
The effects of the disease and the side effects of treatment often make it impractical to maintain employment, or at least work at the same level as you once did. If your HIV symptoms and complications disrupt your ability to work, you may be able to receive Social Security Disability benefits, which provide steady, consistent income for you to pay bills, cover medical care costs, and manage your everyday living expenses.
The Costs of HIV
HIV management requires ongoing expenses in the form of regular doctor visits and prescription co-pays and deductibles. Frequent lab work and other diagnostic tests are necessary to monitor immune function and catch infections and other complications early. As the disease progresses, hospital stays and emergency room visits become more common.
All of these ongoing medical expenses add up quickly, and make it hard for HIV patients to meet their financial obligations. This is especially true if income from employment is low due to absences from work or job loss.
According to the CDC, the average lifetime cost of treating HIV is $379,668. For most people, Highly Active Antiviral Therapies (HAARTs) account for the highest percentage of annual treatment expenses. Healthline reports that antiviral prescriptions average between $600 and $2,700 per month, and with most of these medications, there is no generic drug option.
While prescription expenses are astronomical, HAARTs are the most effective method of slowing HIV’s progression and for improving both life expectancy and quality of life as an HIV-positive person. An HIV counselor or social worker may be able to help you save on treatment costs, but your prescriptions and other treatments will still take a significant financial toll.
Approval for Social Security Disability benefits can help lessen your financial concerns. Disability applicants additionally meet qualification requirements for Medicare (after one year with SSDI) and/or Medicaid (immediately with SSI in many states). These medical programs can help lower your costs for HIV treatments as well.
Medically Qualifying for Benefits for HIV
As a viral infection that compromises the immune system, you’ll find the Social Security Administration’s (SSA’s) listing for HIV in the Immune System Disorders section of the Blue Book. The Blue Book is a technical manual, written for doctors and others with the expertise to understand complex medical terminology. This means you’ll likely need your doctor’s help to fully understand HIV disability listing.
Your doctor can help decipher the qualification requirements and the medical evidence necessary to be approved for benefits. To qualify through the Blue Book, your HIV must be advanced and cause significant and frequent symptoms and complications despite treatment.
Specifically, the SSA needs to see through your medical records that at least one of the following is true:
- You experience frequent or persistent bacterial, fungal, viral, or parasitic infections
- You’ve developed cancer and that the cancer is advanced or terminal
- There is fluid collecting on the brain or brain swelling that causes severe disruption in your ability to think or move effectively
- You’ve had severe weight loss (HIV-wasting syndrome)
- Uncontrolled and persistent diarrhea has required you to have IV fluids and nutrition via a feed tube for a month or longer
- You experience other types of infections (sinusitis, encephalitis, sepsis, etc) that require hospitalization, IV therapy, or which are resistant to treatment
- Your frequent infections and other complications have severely compromised your activities of daily living , also called ADLs.
If you’re unable to meet or closely match the disability listing, then you’ll have to proceed through additional reviews to determine your eligibility.
Qualifying for Benefits without Meeting a Disability Listing
For HIV to qualify for benefits without meeting a disability listing, you must:
- Have thorough medical records
- Have a doctor that can issue a strong summary statement on your behalf
- Be able to complete “function report forms” that make a compelling argument that you are disabled despite not qualifying through the Blue Book
Functional report forms are a standard part of the “residual functional capacity” (RFC) analysis the SSA completes when an applicant doesn’t qualify under a disability listing. An RFC looks at your physical and mental limitations caused by your HIV symptoms, complications, and treatments. The SSA examines your activities of daily living or ADLs to determine how severely you’re limited by your health issues.
ADLs included in the RFC are things like shopping for groceries, traveling to doctor visits, cleaning your home, preparing food, and staying in touch with friends and family, among others. Severe nausea, weakness, persistent diarrhea, muddled thinking, and other common complications of HIV treatment alone can make it impossible for you to keep up with everyday tasks. For the SSA to see the full extent of your limitations, you and your doctor must both provide detailed information on the manner in which your HIV and required treatments affect your everyday life.
In addition to considering your physical and mental limitations during an RFC, the SSA also looks at your work history, job experience, formal education, training, and your age to determine if you’re unable to work at all. If granted benefits through an RFC, it means the SSA has decided you can’t work in any job that you would otherwise be qualified to perform.
How to Apply for Disability Benefits with HIV
The SSA must usually see the same types of medical documentation regardless of whether you qualify through the Blue Book or through an RFC evaluation. This documentation includes, but is not limited to:
- Lab reports proving a positive HIV diagnosis
- CD4 test results showing immune system compromise and how susceptible you are to opportunistic infections
- Hospitalization or emergency room records going back at least one year
- Diagnostic reports (like lab work, biopsies, imaging tests, etc) documenting complications of HIV, including infections, cancer, if present, or organ damage
HIV disability applications can be submitted online, via the SSA’s website, or in person at the local SSA office. Under some circumstances, remote or phone applications can also be arranged:
- Call 1-800-772-1213 to speak with an SSA representative.
- Visit the SSA’s website to start your Social Security Disability Insurance (SSDI) application.
- Visit the local SSA office to complete a Supplemental Security Income (SSI) application.
- Keep in mind that SSDI applications can also be done at the local branch office.
Take as many records with you as possible for your visit at the local office and be sure to have your records handy if completing your application online as well. You don’t want to leave any blanks on your application. Failing to answer all questions can lead to delays and may even result in denial of benefits.
You can get help with your claim from a friend, family member, disability advocate, or Social Security attorney. You can even have someone else attend an application appointment with you or complete an online application on your behalf