Paying for Proper HIV Treatment and Living a Full & Healthy Life
The Cost of HIV Care
Quality Verified
Updated: October 21, 2023
Quality Verified
Updated: October 21, 2023
Advertising & Editorial Disclosure
In the U.S., just 17 percent of people living with HIV have health insurance through a private provider, and nearly 30 percent have no coverage at all, according to the Centers for Disease Control and Prevention (CDC). That's hard to digest considering the cost of HIV treatment: Care is not cheap, and it is a lifelong expense. Learn more about living with HIV, including potential costs and where to find financial support.
The Cost of Care
The cost of HIV care may vary greatly from person to person. There is no one-size-fits-all treatment plan, and your plan needs to be adjusted throughout your life. According to leading HIV expert Amesh Adalja, MD, of the University of Pittsburgh School of Medicine, the average cost of care for an HIV patient in the U.S. is about $25,000 a year. While the U.S. Department of Health and Human Services (HHS) notes that understanding HIV care costs can be complicated due to variations in medical coverage, accessibility and pharmacies, it does offer a list of wholesale prices for ARTs to help providers, case workers, social workers and patients stay informed of ART costs.
Monthly Wholesale Prices
* = Price may not represent the pharmacy acquisition price or the price paid by consumers
Source: U.S. Department of Health and Human Services, 2015
ARTs and other HIV-related medical costs can be covered by private insurance, federal programs and patient assistance programs. If you're newly diagnosed, the most important thing you can do is fully research your options and discuss available payment resources with your medical provider, says Adalja. He also notes that insurance should cover the costs of antiretroviral therapy (ART), but for those with limited insurance or none at all, there are federal programs that can help.
Payment Options if You're Uninsured or Underinsured
If private health insurance isn't an option, you have a number of other choices for coverage. Adalja points to the Ryan White HIV/AIDS Program, which funds both primary medical care and essential support services for those who need help covering the cost of HIV treatment and care. He explains that grants for AIDS Drug Assistance Programs, or ADAPs, are part of the Ryan White HIV/AIDS Program and are federally funded but administered by individual states. "Each state determines its own eligibility criteria," Adalja says. "Approximately 200,000 people, or one-third of HIV patients [receiving care], in the U.S. are covered by ADAP."
Other federal resources that serve the HIV population include:
For decades, Medicaid has been a lifeline for many people living with HIV. In fact, the Kaiser Family Foundation notes it is the single largest source of medical coverage for people living with HIV in the U.S. In 2010, the Affordable Care Act (ACA) expanded Medicaid to include those living on incomes at or below 138% of the federal poverty line (including single adults without children - a demographic that, for the most part, was previously ineligible). This means that more low-income HIV-positive people can now take advantage of the program. Previously, you had to wait until you had AIDS or were otherwise disabled, but in states that have opted for Medicaid expansion, that's no longer the case, according to AIDS.gov. Undocumented immigrants, however, don't qualify for Medicaid, and legal permanent residents and other legal immigrants must be U.S.-residents for at least five years in order to receive it.
BOTTOM LINE:
If you are living at or below the federal poverty line and need help paying for treatment, enroll in the Medicaid program.
Expanding Medicaid was not the only benefit of the ACA. The legislation established that insurers could no longer deny healthcare coverage to people with pre-existing conditions, including HIV/AIDS. It also mandated that providers who serve low-income, medically-underserved clients - which Ryan White HIV/AIDS Program providers do - be included "in-network." ACA also closes the so-called donut hole within Medicare Part D. Enrollees can receive a 50 percent discount on covered brand name drugs during the coverage gap, and new guidelines for ADAPs makes it faster for them to get out of the hole. Lastly, those who are already covered through private insurance cannot have their policy canceled or rescinded.
BOTTOM LINE:
If possible, automate the payments for your health insurance so costs don't add up and you don't pay potential penalty fees.
ADAP is part of the Ryan White CARE Act, but it is administered by states. This federal program provides HIV-related prescription drugs to low-income people who are unable to pay for medication because of limited or no healthcare coverage. Because ADAPs are administered by states, each one sets its own eligibility requirements and specific drugs that are provided can vary. Under ACA, ADAP benefits are now considered contributions towards Medicare Part D's True Out of Pocket Spending Limit (TrOOP), which means you get out of the donut hole faster.
BOTTOM LINE:
For information on eligibility criteria, contact your state's health department or visit Health Resources and Services Administration.
This federal program serves those 65 and older, people under 65 with certain disabilities and anyone with a specific chronic or disabling condition, such as HIV/AIDS. According to the Kaiser Family Foundation, in 2016, Medicare provided coverage for some 120,000 people with HIV, a number that has continued to grow through the years. Medicare Part B, the medical insurance benefit, covers HIV screenings once a year for those who are under 15 and older than 65 and are at increased risk of contracting HIV, those between 15 and 65 who ask for the test, and those who are pregnant. Part D, the prescription drug benefit, covers approved ARVs.
BOTTOM LINE:
Ask your clinic or service center about a referral if you need help enrolling in Medicare Part B.
Community health centers funded by the federal Health Resources & Services Administration (HRSA) can be found across the U.S. and serve low-income people and others who have limited access to healthcare. You can visit these centers to receive HIV testing and other HIV/AIDS-related services. Fees will be adjusted based on your ability to pay.
BOTTOM LINE:
Check online for the health center nearest you.
Women make up one in five of newly diagnosed cases of AIDS, according to the Foundation for AIDS Research. In rare cases they may pass along the virus to their unborn children. The Children's Health Insurance Program, or CHIP, offers low-cost health coverage to children in need of insurance and who do not qualify for Medicaid. CHIP also covers pregnant women in select states.
BOTTOM LINE:
If you lack health insurance and money to pay for HIV/AIDS treatment for you and your children, enroll your children in CHIP and check out public health programs available to you here.
The Veterans Administration is one of the largest providers of HIV/AIDS screening, treatment, prevent and research.
BOTTOM LINE:
If you are a veteran with HIV/AIDS, check with your local VA center about the resources available to you.
There are also programs available to federally recognized American Indian and Alaska Native Tribes.
BOTTOM LINE:
If you have HIV and are an American Indian or Alaska Native, visit Indian Health Service for information and available resources.
Ways to Reduce Costs
"The primary driver of cost is going to be antiretroviral treatment," Adalja says, discussing the combination drug therapy used to keep HIV from progressing to AIDs. He goes on to explain that it costs more than $1 billion to bring a drug to market, and pharmaceutical companies must have a return on investment in order to continue operations. "The pricing of antiretroviral drugs reflects that fact."
Adalja, however, points out that people with HIV can help control costs by sticking to their treatment plan and medications. "Adherence to therapy is the best way to ensure costs do not go higher due to complications such as opportunistic infections," says Adalja. Among other things, treatment can help preserve cells vital to the immune system (CD4 cells, also known as T-helper cells). As the CD4 cell count decreases, research shows, the cost of care increases. In one Congolese study, patients with opportunistic infections had medical costs that were nine times more than patients without opportunistic infections. Those with a CD4 count below 300 had medical costs that were eight times higher than those with a CD4 count over 300.
If you don't have health insurance or money to pay for antiretroviral treatment or other drugs, look into Patient Assistance Programs, or PAPs. These programs offer lower cost or free HIV drugs to eligible low-income applicants and are run by private pharmaceutical companies and foundations. Eligibility requirements vary by program, but are often based on your income. After you complete one application, the same form can be sent to each company that provides the medication you need. Ask your doctor to help connect you with this program.
Stages of HIV
Acute Infection (Seroconversion)
Seroconversion is the stage in which antibodies to HIV first appear in the blood to fight the invader. Typically occurring one to four weeks after infection, seroconversion symptoms could go virtually unnoticeable or require hospitalization, but usually just resemble the flu. Indicators include fever, rash, headaches, swollen glands, and joint or muscle pain.
Chronic HIV (Asymptomatic)
After passing through the seroconversion stage, there are typically no symptoms for several years or more, according to AVERT, a UK-based organization devoted to HIV education. Some people will experience chronically swollen lymph nodes. Infected individuals go about their daily lives normally, but the virus is continually invading more cells and replicating itself. Unless you are taking antiretroviral drugs (ARVs), which are used to control HIV, this stage usually progresses to AIDS within 10 years, according to the Mayo Clinic.
AIDS (Symptomatic)
The third stage begins when the virus has caused enough damage to the immune system that opportunistic infections may begin taking their toll on the weakened body. Once this happens, a person is considered to have AIDS. Symptoms include fever, night sweats, weight loss and diarrhea, persistent coughing, skin issues, frequent infections and other serious illnesses.
Other Expenses to Consider
In some cases, treatment and medication costs are just part of the equation. For some, particularly low-income people, even smaller expenses can be overwhelming. Some costs to keep in mind include:
HIV testing
Many health centers and clinics across the U.S. offer free HIV testing - to find a location, visit the CDC's GetTested website. If you prefer to use an FDA-approved home test, however, you'll need to pay for that out-of-pocket. Common tests include:
Note: Antibodies to HIV show up 3 to 12 weeks after exposure. If you get tested during this "window period" and the result is negative, you should re-take the test 3 months afterward, according to the CDC.
The cost of side effects
Antiretroviral drugs can have side effects you may need to be combated with additional medications or hospital visits. The Partnership for Prescription Assistance can help reduce the cost of medications, while federal disability programs can help cover living expenses if someone who is HIV-positive is unable to work.
Housing
The National AIDS Housing Coalition has published expansive research underscoring the importance of housing assistance in improving health outcomes for those living with HIV. Many people with HIV worry about not only paying for housing but being able to stay in their homes. Stable housing helps lead to healthier, more constant environments which can help make opportunistic infections less likely to occur. The U.S. Department of Housing and Urban Development has an office devoted to safe and stable housing for low-income people with HIV/AIDS. Its Office of HIV/AIDS Housing oversees the Housing Opportunities for Persons with AIDS (HOPWA) program, which provides grants to communities, states and nonprofit organizations offering rental assistance, community residences and other housing support resources for people living with HIV/AIDS. You and your family are eligible for assistance if, among other things 1) you are medically diagnosed with HIV/AIDS and 2) you are low-income or at or below 80 percent of the median income of the area in which you live.
Diet and exercise
Healthy eating and exercising are crucial for anyone living with HIV. Nutritious food and regular exercise strengthen the immune system and ward off infections, keeping HIV under control. You can save money on a gym membership by walking, jogging or riding a bike regularly, but eating well can be expensive. Many communities across the country, however, have a food pantry for people with HIV/AIDS who cannot afford enough healthy food on their own. You can find a local food pantry by searching online.
Legal fees
Unfortunately, people living with HIV may face discrimination, and they may not have enough money to hire a lawyer on their own. The Center for HIV Law & Policy works to advance the rights of those living with HIV and ensure they are being treated fairly. Among other things, you can check the Center's list of state HIV laws and resources.
Financial Assistance Resources and Information
- The Affordable Care Act and HIV/AIDS
Aids.gov has created an expansive report on ACA mandates for the treatment and care of HIV-positive Americans. - AIDS Drug Assistance Programs
The ADAP Advocacy Association provides a directory of ADAP programs available both nationally and locally. - Interior AIDS Association
Although its first mission is prevention, IAA also offers financial assistance specifically for low-income individuals in Fairbanks, Alaska, who are HIV-positive. - TheBody
Remedy Health Media offers this 50-state guide to HIV/AIDs resources, including county and city programs that offer free food, dental care, HIV testing, housing assistance, counseling and case management for people with HIV/AIDS. - State HIV/AIDS Hotlines
All states (as well as many territories) have a hotline for HIV-positive individuals who want to learn more about federal assistance programs. The Health Resources and Services Administration maintains a directory of the numbers. - WomensHealth.gov
An office within the Department of Health and Human Services, Women's Health highlights ways to pay for HIV care and associated costs, ranging from federal funding for drugs to subsidized housing.
HIV Prevention: Reducing Your Risk and Avoiding Lifetime Treatment
The best way to avoid expensive healthcare costs is by lowering your risk for HIV. If you're sexually active, using a combination of the strategies below can help keep you, and your partners, stay safe and avoid paying for a lifetime of expensive medical treatment.
Who Is at Risk for HIV?
Although transmission factors are the same for everyone, some groups are more at risk for HIV than others. If you fall into one of the following categories, consider talking to your doctor about specific ways you can reduce your HIV risk.
Gay and bisexual men
While anyone is able to contract HIV, gay and bisexual men are more at risk than other gender groups. They accounted for 70 percent of all new HIV diagnoses in 2017, notes the CDC. Another important factor within this demographic is age - also according to the CDC, in 2010, gay and bisexual men aged 13 to 34 accounted for 64 percent of those new infections.Intravenous drug users and sex workers
Due primarily to sharing needles, intravenous drug users are at a higher risk of acquiring HIV than non-users. HIV is also most commonly transmitted via sexual intercourse and sex workers often engage in sexual activity with many different partners, which can increase the risk of HIV. Mixing these two activities further increases the risk, according to the CDC.Certain ethnic and racial minorities
Some ethnic and racial groups see relatively high concentrations of the virus in their communities. African-Americans are the most affected group in America, making up 43 percent of all new cases in 2017, according to the CDC. Hispanics/Latinos are also disproportionately affected, accounting for 26 percent of new diagnoses in 2017. Although smaller in size than other ethnic groups, the CDC notes that American Indians, Alaska and Hawaii natives, and Pacific islanders all experience higher rates of infection than Asians or whites.
Ways to Reduce the Risk of HIV
For You
Get tested
The starting point for risk reduction is getting tested for HIV, particularly before starting any new sexual relationship. Just as importantly, your partner should get tested, too. If you have sex before getting tested, don't just skip testing altogether. HIV is not automatically transmitted every time an HIV-positive person has sex, so regular testing is a good idea. AIDS.gov recommends getting testing at least once a year.
Understand the risks of each sexual activity
Different types of sexual behaviors carry different risks for infection when one of the partners is HIV-positive. Being penetrated during anal sex is the riskiest sexual activity because the lining of the rectum is thinner than elsewhere on the body, so it is more apt to tear slightly during sex. Penetrating during anal sex is the second riskiest activity because the urethra can come into contact with blood or rectal fluid. For women, vaginal intercourse also carries a risk of infection because they can be exposed to semen or pre-seminal fluid. For men, the urethra can come into contact with blood or vaginal fluid. Oral sex carries the lowest risk for getting and transmitting the virus.
Have fewer sexual partners
The more people you have sex with, the greater your chances of getting HIV. Being in a monogamous relationship can reduce your risk factor, but if you're single and sexually active, be sure to practice safe sex.
Use condoms
Consistent and correct usage of condoms greatly reduces the chances of becoming infected. In a study of 123 mixed-status couples, those who correctly used condoms every time they had sex saw no infections. Among 122 mixed-status couples who only used condoms some of the time, 12 partners became infected. Considering condoms cost approximately a dollar each, it's more than a worthy investment. (If cost is an issue, check with your health provider about where to get free condoms.)
Get circumcised
Some men who have heterosexual sex can lower their risk of contracting HIV by getting circumcised. An HIV-negative man who is circumcised and has sex with an HIV-positive woman is 50 percent less likely to become infected, according to the CDC. Male circumcision can also help reduce the chances of a man getting herpes and HPV from a woman with those infections. There is no evidence, however, showing that circumcision reduces the risk of HIV-negative partners who are penetrated during anal sex by a circumcised partner who is HIV-positive.
Talk to your doctor about PrEP
Pre-exposure prophylaxis, also known as PrEP, is a drug that can be taken by people who don't have HIV but are at a higher risk for becoming infected. The common name for this drug is Truvada. If you're considering going on this medication, you must test negative for HIV before getting a prescription. According to the New York State Department of Health, PrEP currently costs between $8,000 to $14,000 per year, which doesn't include the cost of four required checkups and any potential lab tests. Some insurers will cover the cost, but others may not. So if you're considering the drug, check with your insurance provider for more details.
For Everyone
Although researchers are constantly working to find a cure for HIV/AIDS, prevention remains the most successful strategy for staying HIV-negative. Some of the best modes of prevention on a larger scale include:
Safe sex education
Vast amounts of research show that latex condoms are one of the cheapest yet most effective ways you have to prevent HIV transmission. Many community clinics and nonprofit sexual health groups provide condoms for free if you live in the area, as well as information on other safe sex practices such as getting tested and the HIV risks of various sexual activities.
Proper needle disposal
Aside from sexual intercourse, used needles are the biggest cause of HIV infections. Intravenous drug use with shared needles poses a risk not only to people sharing the needles but also to their sexual partners. Syringe Services Programs include organizations and health clinics that recognize the risk of sharing needles, and provide new needles in their offices as well as a place to safely dispose of used needles. If you use needles, see whether your city has a needle exchange program and safe ways of needle disposal, including drop boxes or collection sites, household hazardous waste collection sites, mail-back programs and special pick-up services.
Vaccines
According to Aids.gov, creating a safe and affordable vaccine to prevent HIV infections is the best option for controlling and/or eradicating HIV globally. While no vaccine currently exists to prevent transmission or cure those with the virus, scientists believe it's possible to create one. In addition to PrEP, researchers have also created a post-exposure prophylaxis (PEP) for individuals who may have been exposed to the virus. If taken within three days, PEP has been shown to reduce the chances of becoming HIV positive.
HIV Testing Basics
Numerous types of HIV tests exist, though almost all look for the same sign: antibodies. If you're exposed to the virus, your immune system will produce antibodies to combat the infection. The CDC recommends that all people aged 13 to 64 be tested for HIV at least once in their lives as part of a routine checkup. Individuals should get tested annually if they are:
- Men having sex with other men
- Having sex with an HIV-positive partner
- Having sex with more than one partner since the last HIV test
- Sharing needles
- Infected with a sexually transmitted disease
- Being diagnosed or treated for hepatitis or tuberculosis
- Having sex with someone who falls into any of the above categories, or whose sexual history is unknown
Reading the Results
When reviewing test results, it's important to understand how to properly read them. First, remember that test results are not always accurate. If you've recently engaged in risky behavior, it may be worth doing a follow-up test even if your first test shows negative. Similarly, a positive result could be a misreading. Here are some things to keep in mind when reading results:
When using a test that relies on antibodies, keep the timeframe in mind. It can take up to three months (and occasionally six months) for your body to produce enough antibodies to be picked up by these tests. Even if you get a negative reading within the three-month window since a possible exposure, it's important to take the test again at the six-month mark to be certain. You should also remember that test results can only read prior exposure. Therefore, if you continue to engage in risky sexual behavior after the first test, you should get tested again.
An initial positive test result will always be followed up with another test to ensure accuracy. HIV professionals suggest taking the same type of test to limit the number of variables when retesting. If the test comes back positive again, individuals are considered HIV-positive.
Once HIV transmission has been confirmed, talk to your doctor about starting a series of antiretroviral drugs as soon as possible. These drugs improve your chance of living a relatively long and healthy life. Also take stock of your activities and improve your lifestyle choices, including eating healthy foods, eliminating nicotine and reducing alcohol intake. Lastly, get screened for other sexually transmitted infections, as these can cause severe health problems when paired with HIV.
Treatment and Care:
The methods for treating and caring for individuals with HIV went through a revolution in the 21st century. Here are some things newly diagnosed individuals should know:
HIV care can be provided by an infectious disease specialist, but internal medicine specialists, general practice doctors and nurse practitioners can all potentially be the primary physician someone with HIV goes to. Preventing HIV from developing into AIDS, though, is not a matter of just sticking to a drug regimen — and healthcare providers approach it holistically. For instance, people living with HIV may need to see a nutritionist regularly to make sure their diet is appropriate. Similarly, appointments with a mental health counselor or substance abuse counselor may also be essential in maintaining — or transitioning to — wellness.
Find an HIV provider as soon as you are diagnosed so you can get on ARVs quickly and begin slowing the virus. Local nonprofits can help you find providers in your area, as can clinics that provide testing services. Family doctors can also recommend and refer you to quality providers.
Coming with your medical records, including vaccinations, is important because it gives your doctor information about you. But remember that you are also there to get information. Visits are completely confidential, so use them as an opportunity to ask questions. Once there, speak up if you don't understand the answers you receive or need more information. Doctors are knowledgeable professionals, but they need you to be a proactive partner in your care.
Treat it holistically and make lifestyle changes as needed. This includes eating well, refraining from smoking, limiting alcohol consumption and staying current with recommended vaccines. Medication can only do part of the work, so you'll need to employ other tactics to keep your immune system humming.
Treatment Options & Common Side Effects
Options for treatment all include a combination of medicines that not only help individuals live robust lives but also reduce the risk of transmission to others. There are six drug classes under the antiretroviral therapy umbrella.
While all of these antiretroviral regimens have been proven effective, they can have serious side effects. Depending on the drugs your doctor prescribes, common complications can range from headaches and dizziness to swelling. Since these drugs are taken every day for a lifetime, one of the biggest risks is liver and kidney damage, which is why alcohol reduction, healthy eating and increased water intake are all important for people living with HIV.
Choosing a Regimen
There are many factors that play into a physician's decision on which regimen to prescribe to a patient. In addition to potential side effects, other things to consider when selecting treatment include:
Drug interactions
Depending on your other medicines, certain antiretroviral treatments (ART) could have adverse effects. It's important to disclose all drugs you are taking before beginning HIV treatment.Convenience
Because most drug regimens involve taking at least two to three different types of medication, an option that combines these into one pill makes it more likely that you'll be able to follow your treatment plan. This is also better for busy individuals who may forget to take their meds every day.Drug resistance
As you continue your treatment and HIV multiplies in the body, your antiretroviral therapy regimen may need to be changed to avoid drug resistance. Because HIV can mutate, a treatment plan that worked in the past may become ineffective over time.Cost
In some ways, cost can be out of your control since it's dependent on your treatment needs. Just as there is no one-size-fits-all treatment therapy, there are also different options available to you if you need financial assistance.
The Importance of Medication Adherence
If you're living with HIV, adhering to a prescribed regimen is one of the most important things you can do to maintain your health and control medical costs. When taken properly and consistently, ARV regimens are able to block HIV from destroying the immune system and reduce the risk of transmission. Missing a day or not following instructions can open the door to HIV attacking the immune system and multiplying in the body.
Living a healthy lifestyle also greatly enhances your ability to live a longer, more satisfying life. Here are some of the basics:
- Eating a balanced diet comprised of fruits and vegetables, protein, carbohydrates, dairy, and some fats and sugars
- Exercising regularly to combat cardiovascular issues, boost T cells, stave off depression, and fortify the immune system
- Monitoring mental health because certain medications can increase the risk of depression
- Finding support from friends, family and others living with HIV/AIDS
- Quitting smoking, as people living with HIV are at a heightened risk for cardiovascular disease
HIV/AIDS Resources
- AVERT
Best known for its international advocacy work, AVERT has a website with essential information on prevention, testing and living with HIV. - Center for AIDS Prevention Studies
Housed at the University of California, San Francisco, CAPS presents the latest research on HIV prevention. - Elizabeth Glaser Pediatric AIDS Foundation
EGPAF works to both prevent and eliminate AIDS in children through research, advocacy, and prevention and treatment initiatives. - American Foundation for AIDS Research (amfAR)
With the goal of "making AIDS history," the foundation is dedicating to laying the groundwork for a cure for AIDS by 2020. - Housing Opportunities for Persons with AIDS
This federally funded program helps people with HIV/AIDS find an affordable place to live through the U.S. Department of Housing and Urban Development. - International AIDS Candlelight Memorial
Created in 1983, IACM is the largest grassroots campaign dedicated to HIV awareness. The memorial takes place on the third Sunday in May and is observed in 115 countries. - National HIV Testing Database
People who do not know their HIV status can use this CDC resource to find a free, fast and confidential testing site near them. - National Prevention Information Network
NPIN, working under the CDC, has compiled a comprehensive list of contact information and services for local support groups. - North American Syringe Exchange Network
NASEN is made up of organizations that provide new syringes to intravenous drug users and educate them on the dangers of sharing needles. It maintains a directory of exchange sites. - Open Hand
Projectopenhand.org delivers meals and nutrition education to people with chronic disease, including HIV/AIDS. - Ryan White HIV/AIDS Program
Delivered through the U.S. Department of Health and Human Services, this program provides comprehensive care for uninsured or underinsured individuals living with HIV/AIDS.
About Amesh Adalja
