Cost of hiv treatment

Contents

Can You Afford Your HIV Treatment?

There’s no getting around it: HIV drugs cost a lot of money. In fact, the lifetime cost of care for a person living with HIV can total hundreds of thousands of dollars. But the good news is that no one living with HIV in the United States has to pay the full cost out of his or her own pocket.

“The average cost of HIV treatment is $14,000 to $20,000 a year,” says Michael Kolber, MD, a professor of medicine and director of the Comprehensive AIDS Program and Adult HIV Services at University of Miami Miller School of Medicine in Florida. “If you’re paying $1,000 a month, you’re doing really well.”

Modern HIV drugs can keep people healthy for decades, but if you take them you could be facing well over $400,000 or more in lifetime costs for HIV treatment. Unfortunately, real or perceived cost is a significant barrier to care — data suggests that only about half of low-income people living with HIV are receiving the HIV drugs they need because of cost.

However, Dr. Kolber says, the cost of HIV/AIDS treatment has come down as HIV drugs have become more sophisticated. Single-dose or combination HIV drugs can significantly reduce direct costs and co-pays.

“Cost depends a lot on which regimens are used,” adds HIV expert Brad Hare, MD, an assistant clinical professor of medicine and the medical director of the University of California, San Francisco, Positive Health Program at San Francisco General Hospital. Additional infections can also increase cost. For example, data suggests that a year of optimal HIV treatment costs $18,300 or more while 48 weeks of treatment for HIV and hepatitis C together will cost $29,000 or more.

Paying for Your HIV Drugs

HIV drug costs can be covered in a variety of ways:

  • Private health insurance. Depending on the plan you have, this type of insurance can cover healthcare visits and HIV/AIDS treatment programs and medication. “For people with private insurance there are medications that their insurance company may recommend. Often, there are co-pays for the medications depending on the type of insurance,” says Dr. Hare. Having private insurance that covers a percentage of the cost of your medications can provide some relief, but co-pays alone can become a substantial burden over time. Also of note: Fewer than one in three people with HIV has private health insurance to cover the cost of HIV drugs.
  • Medicaid and Medicare. Almost half of those living with HIV in the United States are covered by one of these federally funded programs. In some states, however, you may not be eligible for Medicaid until you have AIDS or are otherwise disabled by HIV. Medicare part D, which was developed to cover medications including HIV drugs, has a restriction in its annual benefit that’s referred to as the “donut hole.” Recipients are required to pay $3,051 out of pocket after their initial, basic coverage benefit is used up and before the catastrophic coverage kicks in to cover the rest of the year’s medication needs. This can be a substantial financial burden for some.
  • AIDS Drug Assistance Programs (ADAP). These programs are federally funded through the 1990 Ryan White Comprehensive Resources Emergency Act and are administered by individual states, which may also contribute to the funding. People of low income who are living with HIV may qualify for assistance through these programs. States often control their costs by limiting the number or type of medications that they will cover through ADAP, which may result in shorter life expectancy for people who are depending on these programs to get HIV treatment.
  • State or community assistance programs. In addition to federally funded coverage programs, many states, communities, and pharmacies have HIV drug assistance programs that can help ease your financial burden. You can find out about these through your treatment clinic or HIV/AIDs organizations.

Coping With HIV Costs

Houston resident Carl Smith (not his real name) says despite having private insurance that covers the cost of his HIV medications, he is constantly juggling the cost of co-pays with other necessary expenses, such as rent and food.

“I just live paycheck to paycheck. I do not live extravagantly; I have simple tastes. It’s very difficult to pay for co-pays when you don’t make a lot of money. I was paying around $400 a month on the four medications I’m on and I had to really shop around,” he recalls.

Since the peak of his co-pay expenses, he has managed to find an organization that will sell him medications in bulk, reducing his costs significantly. But, he says, despite having insurance, his overall cost of care adds up quickly because of deductibles and other unrecovered costs passed on to him through his medical providers. The 45-year-old retail store manager says he has not had to choose between paying his rent and paying his co-pays, primarily because his family has been willing to help him out in times of need, knowing he always pays them back when he can.

“It can get difficult — trying to juggle everything, paying rent on the house, paying the bills, making sure I have everything covered, and I can still eat,” he says.

The Cost of HIV: How to Reduce Your Burden

If you have HIV, the cost of care may inevitably concern you. There are some ways that you can help to keep your long-term costs low, however. Start with the following:

  • Take medications as prescribed. If you miss doses or stop taking your HIV drugs, you run the risk of developing drug-resistant HIV. This means that your future HIV treatment costs will likely be higher because of the additional drugs you’ll need to take to treat drug resistance.
  • Prevent additional infections. Learn how to stay healthy with HIV by protecting yourself from other infections or health conditions that can require expensive treatment. Talk to your doctor about what you need to do to stay well.
  • Work with your clinic. If cost is an issue, keep working with your doctor, clinic, and local community organizations to find ways to pay for your HIV drugs. For example, your doctor may agree to switch you to a one-dose or combination pill to help reduce the cost of treatment. Most doctors would prefer that you take HIV medications you can afford over not taking any at all.
  • Participate in clinical trials. Participating in HIV drug research may give you access to new medications at no or little cost. Find ones in your area at clinicaltrials.gov.

The high cost of HIV care can be daunting — but there are resources available to help. HIV treatment it is too important to skip.

  • Medicare—Medicare is health insurance for people age 65 or older, people under 65 with certain disabilities, and people of all ages with End-Stage Renal Disease. Medicare coverage for eligible individuals includes outpatient care, prescription drugs, and inpatient hospital care. To learn more about Medicare coverage and choices, visit Medicare.gov.
  • Medicare’s 2020 Open Enrollment Period for 2020 has ended, but you still may be able to join, switch, or drop your Medicare Advantage Plan and drug coverage when certain events happen in your life. Learn about Special Enrollment Periods.

    • Federal Programs for Women and Children—There are several Federal programs to help low-income women and children access health care. The Children’s Health Insurance Program (CHIP) provides free or low-cost health insurance coverage for children up to age 19. Each state has its own rules about who qualifies for CHIP. You can apply for and enroll a child in CHIP at any time. There is no limited enrollment period. If the child qualifies, his/her coverage can begin immediately. Visit www.insurekidsnow.gov to learn more and see if you are eligible for coverage or call 1-877-KIDS-NOW (1-877-543-7669). In addition, programs supported by the Maternal and Child Health Services Block Grant, authorized by Title V of the Social Security Act (SSA), serve low-income women, children, and youth with limited access to health care, including children with special needs. Specifically, the Title V Maternal and Child Health program seeks to assure access to quality care, especially for those with low-incomes or limited availability of care.
    • American Indian and Alaska Native Programs—The Indian Health Service (IHS) provides health care services—including HIV services—for members and descendents of federally-recognized American Indian and Alaska Native Tribes. For more information, go to https://www.ihs.gov.
    • Veterans Programs—The Veterans Administration (VA) is the largest single provider of medical care to people living with HIV in the U.S., supporting over 24,000 Veterans living with HIV. If you are eligible, you may be able to receive HIV care through the Veterans Health Administration. VA offers an online benefits website where Veterans, Service Members, and their families can learn about their health care benefits.

    Non-Federal Resources

    Patient Assistance Programs (PAPs) are programs administered by pharmaceutical companies to offer free or reduced-cost antiretroviral (ARV) medicines to low-income people living with HIV who are uninsured or underinsured, and who do not qualify for assistance programs such as Medicaid, Medicare, or AIDS Drug Assistance Programs. Each pharmaceutical company has different eligibility criteria for qualifying for their PAP.

    The U.S. Department of Health and Human Services, seven pharmaceutical companies, the National Alliance of State and Territorial AIDS Directors (NASTAD), and community stakeholders worked together to develop a common patient assistance program application (CPAPA) and companion document that can be used by patients and providers to access these programs.

    Cost Of Treatment Still A Challenge For HIV Patients In U.S.

    Ruben Bermudez stands in front of a sign that says in Spanish, “To love yourself is to protect yourself.” He has struggled to remain eligible for AIDS drug assistance programs since he went on treatment four years ago. Jessica Camille Aguirre/NPR hide caption

    toggle caption Jessica Camille Aguirre/NPR

    Ruben Bermudez stands in front of a sign that says in Spanish, “To love yourself is to protect yourself.” He has struggled to remain eligible for AIDS drug assistance programs since he went on treatment four years ago.

    Jessica Camille Aguirre/NPR

    When Ruben Bermudez, 31, found out that he had HIV more than a decade ago, he didn’t want to take his medicine. He went on treatment for a few weeks, but said the intensive pill regimen made him feel dizzy.

    He stopped treatment and tried to ignore the diagnosis, moving to Florida from Washington in pursuit of sunshine. In 2008, he learned that one of his best friends died of a brain tumor that couldn’t be treated because his immune system has been debilitated by AIDS. Bermudez realized that his only chance at a relatively healthy life would depend on taking pills daily.

    “With his passing I decided to wake up and take control of my health and my life,” Bermudez says. “Because at that point my HIV was spiraling way downhill. I should have been dead.”

    But the pills for HIV that he’s taken daily since then have come with a hefty price tag. Monthly HIV treatment regimens range from $2,000 to $5,000 — much of it for drugs. With the life expectancy for HIV patients increasing, the lifetime cost of treatment in today’s terms is estimated at more than half-million dollars. And while many people qualify for public assistance programs, staying eligible for support is a constant balancing act.

    According to the Centers for Disease Control and Prevention, around half the people diagnosed with HIV in the U.S. don’t receive regular health care. Of those who do, 42 percent receive Medicaid and 24 percent are uninsured.

    People who are uninsured can still qualify for health services through the federally funded and state-run Ryan White Care act, which pays for medication through the AIDS Drug Assistance Program, or ADAP.

    While the Obama administration released $79 million in funding for ADAP last week — eliminating waiting lists in 10 states — the program’s support has fluctuated with each annual congressional appropriations process.

    Each state has an eligibility process to receive ADAP support, and Murray Penner, with the National Alliance of State and Territorial AIDS Directors, explains that in many places the income cut-off limit for aid is $22,000 annually.

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    “Individuals that are receiving their drugs for free through a program like ADAP or through Medicaid,” he says, “are really concerned about earning more than what would then be eligible for that program.”

    For Bermudez, making sure he remains eligible for assistance with his HIV care has meant refusing offers of full-time employment and raises.

    Still, he’s grateful to have the support. “I’m really lucky to have those programs available to me, because without them I probably wouldn’t — I would not — take medication,” he says. “Because I would not be working just to pay for my medication. I probably couldn’t even afford it.”

    Medicaid’s recent expansion under the Affordable Care Act may also make it easier for people living with HIV to pay for care, and many hope that with patents expiring on vital drugs in the coming years, cheaper generics may bring down the price.

    Expanding access to care has implications beyond treating the virus in the person – public health experts say it’s also critical to stopping the disease from spreading. People taking AIDS drugs are much less likely to transmit the virus to someone else, which ameliorates the long-term burden to public assistance programs.

    “When we can avert HIV infections,” says David Holtgrave, a professor at the Johns Hopkins Bloomberg School of Public Health. “We’re not only saving lives. We’re also saving dollars as well.”

    Bermudez, whose health has stabilized since he started taking medications four years ago, hopes to eventually be able to buy private insurance and pay for his drugs himself.

    “Hopefully in the future it would available at a reasonable cost for everyone that is working, so that they won’t have to do the things that I had to do — to quit jobs or to lie about income or just cover it up or anything like that,” Bermudez says. “Because it has to be a way of life that’s comfortable for everybody.”

    HIV/AIDS Comprehensive Care Program

    Ryan White Coverage and Eligibility

    HIV/AIDS Comprehensive Care Program Contact Information

    (608) 263-0946

    Related Resources

    Ryan White Funding

    Who Was Ryan White?

    The UW Health HIV/AIDS Comprehensive Care Program is committed to providing care to people living with HIV, regardless of ability to pay. For those who are uninsured or underinsured, the Ryan White Program provides financial assistance with medical and non-medical services. Note: you do not have to be eligible for Ryan White coverage to receive care at the UW Health HIV/AIDS Comprehensive Care Program clinic.

    Am I eligible for the Ryan White Program?

    You are eligible for Ryan White coverage if you:

    • Are HIV positive
    • Have a household income under 500% of the Federal Poverty Level. In 2020: $63,800 annually for a 1-person household; $86,200 for a 2-person household, and so on.
    • Are a Wisconsin resident
    • Do not have health insurance or have insurance and are responsible for out of pocket costs, including medication copays or coinsurance for office visits

    How do I get coverage?

    • A clinic social worker will enroll you in the Ryan White Program if you are eligible. Ryan White is the payor of last resort, which means we will provide assistance with enrollment in other insurance options if possible.
    • If you ever lose or have a lapse in your health insurance, please call (608) 263-0946 immediately for assistance in obtaining other coverage. This is very important so you can continue to see your doctor, and get your medications.

    What does Ryan White cover?

    The Ryan White Program covers the costs of medical care and support services for both uninsured and insured eligible individuals. If you are uninsured, the Ryan White Program will cover the primary charge for the service and you may be responsible for a small copay. If you are insured, the Ryan White Program will provide assistance with your copays, coinsurance and deductibles for eligible services.

    Will I pay anything if I’m enrolled in Ryan White?

    • If you are uninsured, you may be responsible for a small copay based on your individual income. See the fee scale (pdf)
    • Please call us to update your income if it changes, so your copay amount is correct
    • We do not send these bills to collections

    Questions?

    Please call clinic medical case managers at (608) 263-0946.

    Coverage

    Medical Services Within HIV Clinic Ordered by HIV Provider:

    • HIV clinic visits with HIV medical provider
    • Labs: CD4 count and viral load, resistance testing; Other diagnostic labs, tests, procedures or imaging ordered by HIV medical provider (including ultrasounds, CT scans, MRIs, lung function tests, bone mineral density scans).
    • Cervical cancer screening: annual cervical pap smear in HIV clinic and referrals to Gynecology for follow-up for abnormal cervical paps, including repeat cervical paps, colposcopies, and biopsies (cervical cancer treatment not covered)
    • Anal cancer screening (anal cancer treatment not covered):
      • Annual anal pap done in HIV clinic
      • Referrals to colorectal surgery clinic for anoscopy/biopsy needed for follow-up of abnormal pap
      • Referrals to surgeon for consultation on Condyloma
    • Screening and treatment for tuberculosis (TB)
    • Screening and treatment for Hepatitis B and C
    • Screening and treatment for sexually transmitted infections (STIs)
    • Routine immunizations administered in HIV Clinic
    • Primary care provided in HIV Clinic
    • Urgent care provided in HIV Clinic
    • Smoking cessation treatment

    Other Services Within the HIV Clinic:

    • Medical case management provided by HIV clinical social workers
    • Clinical pharmacy consultation provided in ID clinic
    • Mental health screening and referral for treatment
    • Addiction screening and treatment
    • Condoms – external (aka, male) and internal (aka, female or insertable) – and lubricant

    Medications:

    • Antiretrovirals and other HIV related outpatient medications (primarily covered by ADAP program)
    • Other outpatient medications, not covered by ADAP:
      • Other outpatient medications prescribed by HIV provider, primary care provider, or psychiatric/addiction medicine provider filled at UW Health Pharmacy.

    Services Outside of the Clinic:

    • Psychiatric treatment provided by a UW Health psychiatrist
    • Psychiatric treatment and groups provided by Journey Mental Health Center (JMHC)
    • Covered if referral by HIV provider and scheduled by HIV social worker in designated clinic at JMHC
    • Medications filled at UW Health Pharmacy
    • Colorectal surgery visits for anoscopy and/or biopsy related to the follow-up of an abnormal anal pap result
    • General surgery visits related to the follow-up of an abnormal anal pap result, abnormal anoscopy, or condyloma
    • Dermatology visits related to the follow-up of HIV-related conditions or condyloma
    • Gynecology visits for follow-up of an abnormal cervical pap result, including repeat cervical paps, colposcopies, and biopsies
    • Nutrition clinic visits referred by HIV medical provider
    • Ophthalmology visits for retinal exams
    • Dental care is available at the Beloit Area Community Health Center or ARCW Dental Clinic

    Non-Covered Services (referral to the UW Health Financial Assistance Program):

    • In-patient hospital care
    • Emergency department care
    • Care that is not HIV- or HIV-treatment related

    Resources for Persons Living with HIV

    Paying for HIV Care

    • The Ryan White HIV/AIDS Programexternal icon helps people with HIV/AIDS who have nowhere else to turn for the care they need. If you are living with HIV, you can get medical care and some other services — even if you do not have health insurance or money to pay for health services.
    • The Affordable Care Act (ACA) is a law that was passed to help ensure that Americans have secure, stable, and affordable health insurance. The ACA created several changes that expand access to coverage for people living with HIV. Because coverage varies by state, talk to your health care provider or a social worker to get information about the coverage available where you live. You can find additional information about the ACA and living with HIVexternal icon from the Henry J. Kaiser Family Foundation. You can also contact the ACA helpline at 1-800-318-2596 for more information.
    • Patient Assistance and Expanded Access Programsexternal icon (from the HIV Medicine Association).
    • If you have HIV/AIDS and cannot work, you may qualify for disability benefits from the Social Security Administrationpdf iconexternal icon.
    • Greater Than AIDS answers commonly asked questionsexternal icon on many ways to get health insurance.
    • If you’re on Medicare, their site page explains how to get drug coverageexternal icon.
    • TARGET Center offers videos and online cost calculatorsexternal icon to help you understand options for lowering the cost of health insurance.

    Travel

    • CDC Health Information for International Travel (commonly called the Yellow Book).
      • Section on Immunocompromised Travelers
    • CDC’s Travelers’ Health pages contains find information on:
      • Travel clinics near you;
      • Travel notices for your destination;
      • Recommended vaccinations and precautions for your destination.

    Housing and Jobs

    • The Housing Opportunities for Persons With AIDSexternal icon (HOPWA) Program is the only Federal program dedicated to the housing needs of people living with HIV/AIDS. Under the HOPWA Program, HUD makes grants to local communities, states, and nonprofit organizations for projects that benefit low-income people living with HIV/AIDS and their families.
    • The U.S. Department of Labor offers a number of resources on employment optionsexternal icon for people with HIV.
    • HIV.gov offers advice on getting a new job or returning to workexternal icon and finding stable housingexternal icon.
    • Business Responds to AIDS offers tools for businesses to reduce stigma and prevent discrimination against employees with HIV.

    Legal Issues

    • The Center for HIV Law and Policyexternal icon identifies which states have HIV-specific criminal lawsexternal icon and provides additional resources about disclosure, confidentiality, and the law.
    • The Americans with Disabilities Actexternal icon (ADA) protects people who are discriminated against because they have HIV or have a relationship with someone with HIV.
    • The U.S. Department of Justice explains HIV/AIDS anti-discrimination lawsexternal icon and how to file an HIV/AIDS discrimination complaintexternal icon.

    Stigma

    • The Health Resources and Services Administration provides a history of stigma and the Ryan White HIV Programexternal icon and a videos of stories from the programexternal icon.
    • CDC’s Let’s Stop HIV Together campaign HIV Treatment Works features people living with HIV and their stories, including some testimonials about dealing with stigma. The Let’s Stop HIV Together campaign Stop HIV Stigma has additional information on stigma for persons living with HIV.

    Mental Health

    • To learn more about depression’s causes, symptoms, and treatments, consult the National Institute of Mental Healthexternal icon.
    • Substance Abuse & Mental Health Services Administration (SAMHSA)’s Find Helpexternal icon website a list of Mental Disordersexternal icon, as well as a list of organizations and contact numbers that can help you find mental health treatment and support in your local area.

    Older Adults

    • The Graying of AIDS has much information on HIVexternal icon and aging.
    • CDC has a fact sheet on HIV Among People Aged 50 and Over pdf icon.
    • The National Institute on Aging has an overview of Aging with HIVexternal icon.

    HIV Cost-effectiveness

    What is cost-effectiveness analysis?
    Cost-effectiveness analysis (CEA) is a type of economic analysis where both the cost and the outcome (impact, result, effect, benefit, health gain …) of an intervention are evaluated and then expressed in the form of a cost-effectiveness ratio. The numerator of the cost-effectiveness (CE) ratio represents the cost of the intervention associated with one unit of “outcome”. The denominator is the unit of outcome. It can be expressed using many types of measures including: years of life gained, quality-adjusted life years gained (QALYs), new diagnoses, infections averted, and deaths averted. CEA is usually conducted on interventions that are known to be effective.

    The CE ratio is a fraction used to compare the relative costs and outcomes of two or more interventions. In Example 1, the outcome measure chosen is “new HIV diagnoses” and the CE ratio of the programs evaluated is expressed in terms of “cost per new HIV diagnosis”. The CE ratio of Program A is $41,667 per new HIV diagnosis. This ratio does not reveal the cost of implementing the program nor the number of new HIV diagnoses detected by the program. However, when comparing the CE ratio of Program A to that of Program B, we can say that Program B is more cost-effective than Program A when CE is measured in terms of “cost per new HIV diagnosis,” because at $7,400 per new HIV diagnosis, Program B is less costly for the same outcome.

    Cost per new HIV diagnosis
    HIV interventions, such as screening and partner services, are intended to identify HIV-positive persons who are unaware of their infection. When evaluating several such programs in CE analysis, the outcome “new HIV diagnoses” is often used to enable a comparison across these programs; so the CE ratio is expressed in terms of cost per new HIV diagnosis.

    Cost per infection averted (IA)
    HIV prevention interventions such as syringe exchange programs, counseling for at-risk youth or post-exposure prophylaxis are intended to prevent (avert) infection in HIV-negative persons. Such programs can be evaluated to determine the number of infections prevented that would have otherwise occurred had the intervention not been provided. When evaluating several such programs in CE analysis, the outcome “HIV infections averted” is often used to enable a comparison across these programs; so the CE ratio can be expressed in terms of cost per infection averted.

    The lifetime treatment cost of an HIV infection can be used as a conservative threshold value for the cost of averting one infection. Currently, the lifetime treatment cost of an HIV infection is estimated at $379,668 (in 2010 dollars), therefore a prevention intervention is deemed cost-saving if its CE ratio is less than $379,668 per infection averted.

    As an outcome, the number of HIV infections averted due to a program can be evaluated using different mathematical techniques that vary in complexity and the amount of data or number of assumptions required. Attention should be paid to the timeframe of the intervention effect considered in the evaluation. For example, if the timeframe is one year, then the cost may have to be incurred annually in order to continue to avert the HIV infections.

    Cost per life year (LY) gained
    HIV treatment interventions, including retention in care and treatment adherence, are in part intended to extend the lives of HIV-positive persons. Such programs can be evaluated to determine the number of additional life years gained (or saved) that otherwise would have been lost to premature death. When evaluating these types of programs in CE analysis, the outcome “life years” often is used to compare them; so the CE ratio can be expressed in terms of cost per life year gained.

    Cost per quality-adjusted life year (QALY) gained
    As an outcome, life years do not reflect any of the positive or negative effects on the quality of life of the patients receiving an intervention. For example, drug treatment A may provide an additional 2 years of life dominated by hospitalization while drug treatment B may provide an additional 1 year of life without any significant ill effects.

    A quality-adjusted life year (QALY) is an outcome measure that considers both the quality and the quantity of life lived. The QALY is based on the number of years of life added by the intervention. Each year in perfect health is assigned the value of 1.0. Each year of less-than-perfect health is assigned a value less than 1.0 down to a value of 0.0 for death. If the extra years would not be lived in full health, for example if the patient would lose a limb, be blind or suffer from worse mental health, then the extra life-years may be given a value of less than 1 to account for this.

    HIV interventions intended to improve and/or extend the lives of HIV positive persons can be evaluated to determine the number of additional QALYs gained (or saved) that would have otherwise been lost. When evaluating several such programs in CE analysis, the CE ratio can be expressed in terms of cost per QALY gained.

    Most outcome measures, including infections averted, life years gained and new HIV diagnoses, can be translated into QALYs, thereby providing a consistent measure of comparison across many different types of intervention programs.

    Cost-effectiveness thresholds

    A cost-effectiveness ratio of $50,000 to $100,000 per QALY gained has been long cited in the literature as a conservative threshold for a cost-effective intervention. Traditionally, if an intervention was estimated to cost less than $50,000 to $100,000 per QALY gained, it would be considered cost-effective. However, recent studies have argued that this benchmark is likely too low since the threshold has not been reassessed over time.1 To reflect the advances of modern health care, Braithwaite et al reevaluated the threshold and estimated the plausible range for a cost-effectiveness decision rule to be between $109,000 and $297,000 per QALY saved (in 2003 dollars; $143,000-$388,000 in 2010 dollars).2

    What does “cost-saving” mean?

    When two or more programs are being compared (intervention vs. comparator), the intervention is labeled as “cost-saving” when both the net outcome of the intervention is greater than or equal to that of the comparator and the cost of the intervention is less than the cost of the comparator. A program can only be deemed cost-saving when it is compared to an alternative. The alternative is typically the status quo or the current standard of care.

    In Example 2, Program A is both cheaper and more beneficial than the current standard of care and is therefore a cost-saving alternative. CE ratios cannot be negative.

    If the costs of Program A and the Standard of care are borne by the same institution, then the savings will be reaped by that institution. Often, however, the costs of HIV interventions are borne by many distinct entities, including government, health care systems and individuals, and the savings are not realized by any single entity. In addition, the savings may occur over many years.

    How to interpret a CE ratio?

    At $100,000 per QALY (or at higher thresholds), a program may be considered cost-effective. However, this ratio contains a numerator and a denominator and thus no interpretation can be made as to the annual cost of this program.

    In Example 3, both programs A and B have the same measure of cost-effectiveness in terms of cost per QALY gained, however, Program B is more costly to implement than A. Investment in Program B may nonetheless be justified depending on budgetary constraints and the ability to implement for the program in the population and setting considered.

    If A and B are complementary rather than alternative programs, then they can both be implemented. Implementing Program A and/or B in a particular population and setting requires an evaluation of the number of persons that potentially could be served by the intervention and the resulting overall costs.

    Starting antiretroviral treatment for HIV

    How does HIV treatment work?

    FAST FACTS

    • If you find out you have HIV, it’s recommended that you start antiretroviral treatment as soon as possible.

    • Taking treatment as prescribed by your doctor keeps you healthy and reduces your chances of passing HIV on to others.

    • There are lots of different antiretroviral drug combinations. Your healthcare worker can advise on your options.

    Whether you have recently found out you have HIV or have known for a while, you may have questions about starting HIV treatment. You may have heard about HIV treatment – also called antiretroviral treatment (ART) – or know someone else who is taking it. Talk to your doctor about any questions you have – the information on this page should help you to think about the questions you might want to ask.

    What is antiretroviral treatment?

    Antiretroviral treatment (also known as antiretroviral therapy or ART) are the drugs that treat HIV. Many people living with HIV are taking treatment and staying healthy as a result. Current treatment for HIV is not a cure for HIV, but it can keep HIV under control very effectively.

    How does antiretroviral treatment work?

    ART works by keeping the level of HIV in your body low (your viral load). This lets your immune system recover and stay strong.

    Keeping your viral load low also helps to prevent HIV being passed on.

    With good healthcare and treatment, many people with HIV are living just as long as people who don’t have HIV.

    You can continue to have relationships, to work or study, to make plans, to have a family – whatever you would have done before your HIV diagnosis.

    Effective treatment also means that some people living with HIV are achieving an undetectable viral load. This means that the virus exists in such small quantities in their blood that it does not affect their health and there is zero risk of transmitting the virus on to others. But remember that if you stop taking your medication then your viral load will go back up again.

    When should I start antiretroviral treatment?

    Without treatment, people living with HIV can become ill because of the damage HIV does to the immune system. The immune system is your body’s way of protecting itself from illnesses caused by germs, bacteria or infections.

    It is now recommended that people living with HIV start antiretroviral treatment straight away. This is being implemented in an increasing number of countries. In some places, the decision about when to start treatment is still dependent upon a CD4 count test, which looks at how many CD4 cells are in a small amount of blood.

    The CD4 cells (also called T-helper cells) are an important part of the immune system because they fight germs and infections. HIV attacks CD4 cells and reduces the number of them in your body. Without treatment, HIV slowly weakens the immune system, making it harder for your body to fight off illness or infection.

    You and your healthcare professional will discuss the best time to start treatment.

    When I was first diagnosed, in the mid-90s, life was very different. Treatment was awful, with around 20 tablets a day at high strengths. Times have changed and so have treatments. There really is no reason why you should not live a normal life.

    – Man, aged 44, diagnosed in 1996

    Other reasons to start treatment

    Antiretroviral treatment also lowers your viral load, which makes it less likely that HIV will be passed on. For this reason, it is important that all women with HIV who are pregnant or breastfeeding, take treatment to prevent HIV being passed on to their baby. Anyone living with HIV who is in a relationship with someone who does not have HIV (a mixed-status relationship) should also consider treatment to prevent HIV transmission.

    Being ready to start treatment

    Perhaps the most important factor of all is whether you feel ready to start HIV treatment. Current HIV treatment has to be taken every day for the rest of your life. You might feel good about starting HIV treatment, because it is something you can do to stay healthy and strong. But it is also normal to feel worried about it, or to have questions. Give yourself time to prepare for taking HIV treatment every day.

    In addition to talking to your doctor, you may find it helpful to talk to someone who has experience of taking HIV treatment. Many clinics have peer mentors, who can offer support and information, or can put you in touch with community organisations and peer support groups.

    What is the best HIV treatment to start with?

    The drugs used to treat HIV are called antiretroviral drugs (ARVs). There are several different types and they work in different ways. HIV treatment is made up of three or more antiretroviral drugs taken together. Sometimes, these drugs are combined into one pill.

    There are lots of antiretroviral drugs, and they can be combined in different ways. The World Health Organization (WHO) has newly recommended that adults and adolescents starting HIV treatment take a combination of HIV drugs with dolutegravir (DTG) as one of the main components.

    WHO has also recommended alternative combinations. Your doctor will be able to tell you which drugs are best for you.

    What else should I consider?

    If you have a choice of drugs, talk to your doctor about which combination might be the best one for you. If you are taking treatment for another health condition, or contraception (family planning), it’s important that your doctor knows about this, as one drug may affect another. Taking certain recreational drugs can cause your treatment to stop working properly, but it is important that you always take your treatment.

    Most antiretroviral drugs are taken once a day, with or without food. However, some drugs are taken twice a day, or should be taken with food. If this might be something you find difficult, talk to your doctor about your options.

    In some countries, the cost of drugs and your insurance cover may be something you have to consider.

    Does antiretroviral treatment have side-effects?

    As with all medication, starting to take ARVs can cause some side-effects, particularly in the first few days of treatment. This is another topic you could discuss with your doctor, as it might also affect your choice of drugs. Your treatment will be monitored and you may be recommended to switch drugs if they aren’t working for you.

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    Antiretroviral Therapy Is the Biggest Expense in HIV Care

    Antiretroviral (ARV) therapy accounts for the lion’s share of health care costs for people living with HIV in the United States, according to an article published online September 20 in the journal AIDS.
    HIV care is expensive, and it has been since the beginning of the HIV epidemic. In 1996, average costs exceeded $20,000 per year in the United States. By 1998, this had dropped slightly to $18,300 per year.
    Though most people with HIV do not pay for the entire cost of their health care out of their own personal incomes or savings, the high price of HIV disease management does have direct financial implications for many positive people.
    Cash-strapped states around the country have been cutting costs in a number of ways. Several states, for example, have made it harder to qualify for waiting lists for AIDS Drug Assistance Programs (ADAPs). And for people with private health insurance, drug co-payments and deductibles have risen sharply in recent years.
    To work toward effective cost-containment measures, policy makers and advocates first need to understand the overall cost of HIV care in the United States, and where those costs are coming from. There have been no comprehensive costs assessments conducted since at least 2000, when contemporary ARV regimens in were first introduced.
    To help answer this question, Kelly Gebo, MD, MPH, from Johns Hopkins University School of Medicine in Baltimore, and her colleagues examined data from 14,691 adults who received HIV care in 2006 at a consortium of high-volume HIV clinics across the country.
    The majority of the study participants were older than 40, the majority were black or Latino, and 71 percent were male. About 6 percent had CD4s under 50, 15 percent had CD4s between 51 and 200, 45 percent had CD4s between 201 and 500, and 35 percent had CD4s over 500. ARV use was about 80 to 85 percent in most CD4 ranges.
    Gebo’s group found that the average annual cost of HIV care in the study was $19,912, with most people racking up costs between $11,045 to $22,626 per year. Total costs were substantially lower for people with less advanced HIV disease. For people with CD4s under 50, the average yearly cost was $40,678. For people with CD4s over 500, the average cost was $16,614.
    ARVs represented a significant proportion of the costs of HIV-related care. For people with the highest CD4 counts, ARVs accounted for as much as 74 percent of all health care costs. Even in people with very low CD4s, where hospitalization and other costly procedures are most common, ARVs still represented 23 percent of all costs.
    For people with less advanced HIV disease, the primary costs aside from antiretrovirals were non-HIV medications, outpatient provider visits and drug resistance testing. For those with advanced disease, the highest cost by far was for inpatient treatment, followed by opportunistic infection treatment and prevention.
    “The annual per-person costs of care for HIV-infected patients in the United States are high,” the authors write. “It is misleading to focus on a single number as representing ‘the’ cost of treating HIV infection. Costs estimates varied greatly, depending on severity of illness.”
    They conclude: “Given the potential increases in costs of therapeutic agents, toxicities and comorbidities due to , and aging-related comorbidities, it is likely that the aggregate costs of HIV care will continue to increase for the foreseeable future.”

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    HIV/AIDS Medicines

    What is HIV/AIDS?

    HIV stands for human immunodeficiency virus. It harms your immune system by destroying CD4 cells. These are a type of white blood cells that fight infection. The loss of these cells makes it hard for your body to fight off infections and certain HIV-related cancers.

    Without treatment, HIV can gradually destroy the immune system and advance to AIDS. AIDS stands for acquired immunodeficiency syndrome. It is the final stage of infection with HIV. Not everyone with HIV develops AIDS.

    What is antiretroviral therapy (ART)?

    The treatment of HIV/AIDS with medicines is called antiretroviral therapy (ART). It is recommended for everyone who has HIV. The medicines do not cure HIV infection, but they do make it a manageable chronic condition. They also reduce the risk of spreading the virus to others.

    How do HIV/AIDS medicines work?

    HIV/AIDS medicines reduce the amount of HIV (viral load) in your body, which helps by

    • Giving your immune system a chance to recover. Even though there is still some HIV in your body, your immune system should be strong enough to fight off infections and certain HIV-related cancers.
    • Reducing the risk that you will spread HIV to others

    What are the types of HIV/AIDS medicines?

    There are several different types of HIV/AIDS medicines. Some work by blocking or changing enzymes that HIV needs to make copies of itself. This prevents HIV from copying itself, which reduces the amount of HIV in the body. Several medicines do this:

    • Nucleoside reverse transcriptase inhibitors (NRTIs) block the reverse transcriptase enzyme
    • Non-nucleoside reverse transcriptase inhibitors (NNRTIs) bind to and later change the reverse transcriptase enzyme
    • Integrase inhibitors block the integrase enzyme
    • Protease inhibitors (PIs) block the protease enzyme

    Some HIV/AIDS medicines interfere with HIV’s ability to infect CD4 immune system cells:

    • Fusion inhibitors block HIV from entering the cells
    • CCR5 antagonists and post-attachment inhibitors block different molecules on the CD4 cells. To infect a cell, HIV has to bind to two types of molecules on the cell’s surface. Blocking either of these molecules prevents HIV from entering the cells.

    In some cases, people take more than one medicine:

    • Pharmacokinetic enhancers boost the effectiveness of certain HIV/AIDS medicines. A pharmacokinetic enhancer slows the breakdown of the other medicine. This allows that medicine to stay in the body longer at a higher concentration.
    • Multidrug combinations include a combination of two or more different HIV/AIDS medicines

    When do I need to start taking HIV/AIDS medicines?

    It’s important to start taking HIV/AIDS medicines as soon as possible after your diagnosis, especially if you

    • Are pregnant
    • Have AIDS
    • Have certain HIV-related illnesses and infections
    • Have an early HIV infection (the first 6 months after infection with HIV)

    What else do I need to know about taking HIV/AIDS medicines?

    It’s important to take your medicines every day, according to the instructions from your health care provider. If you miss doses or don’t follow a regular schedule, your treatment may not work and the HIV virus may become resistant to the medicines.

    HIV medicines can cause side effects. Most of these side effects are manageable, but a few can be serious. Tell your health care provider about any side effects you are having. Don’t stop taking your medicine without first talking to your provider. He or she may give you tips on how to deal with the side effects. In some cases, your provider may decide to change your medicines.

    What are HIV PrEP and PEP medicines?

    HIV medicines are not just used for treatment. Some people take them to prevent HIV. PrEP (pre-exposure prophylaxis) is for people who don’t already have HIV but are at very high risk of getting it. PEP (post-exposure prophylaxis) is for people who have possibly been exposed to HIV.

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    Study examines cost of HIV medication across Canada

    Toronto, December 12, 2018

    By Ana Gajic


    Photo from BigStock.com

    Picture two men, living nearly identical lives.

    They are both 30 years old, single, with no dependents and a net annual income of $39,000. Both have been diagnosed with HIV, and both are taking the most commonly prescribed medication to suppress HIV infection. This prolongs their life, reduces their risk of infections, and prevents the transmission of the virus to others.

    One man lives in Nova Scotia, while the other lives in Ontario. Apart from their home province, what else is different about them?

    According to a team of researchers at St. Michael’s Hospital, it’s the amount they’ll pay for their HIV medications, known as antiretroviral drugs.

    Recently published in CMAJ Open, a St. Michael’s study suggests that depending on where a patient with HIV lives, the cost for medications can vary greatly. Also, in some provinces, income matters. For example, while the man living in Nova Scotia is eligible for four co-payments of $11.25 for each 90-day prescription equaling a cost of $45 annually, the man in Ontario would be required to pay an annual deductible of 3.4 per cent of his net household income and four co-payments of $2.00 – totaling $1,352 for the year. Someone in a different income bracket in Ontario would pay more or have no out of pocket payments.

    “We found that because each jurisdiction, province or territory makes their own decisions about how drugs are covered, patients face different realities across the country,” said Dr. Deborah Yoong, a pharmacist at St. Michael’s who led this research. Her team gathered data from government websites and had a pharmacist in each jurisdiction validate the information they found.

    In the wake of the 30th annual World AIDS Day earlier this month, Dr. Yoong said there have been great strides made in maintaining health and a high quality of life for patients with HIV — but gaps remain.

    “HIV is a long-term disease that can be controlled with adherence to medication and engagement in care,” she said. “But we won’t be able to achieve all that the drugs are able to provide, such as decreased morbidity, mortality and transmission, if people aren’t able to afford their medication.”

    Dr. Yoong noted that while it’s positive that antiretroviral reimbursement programs exist to support patients paying for treatment in different ways across jurisdictions, there is still considerable variability amongst them. An individual could incur hundreds or thousands of dollars of additional costs depending on where they live. Interestingly, Dr. Yoong found, the discrepancy was highest for high-income earners who didn’t have private drug insurance.

    In addition to there being differences in government subsidies, the research team also uncovered a range of program eligibility, administration structures and restrictions in programs across the country.

    “There are people in our clinic, in every clinic, who are stressed because they can’t afford treatment,” Dr. Yoong said. “Sometimes, people stop medications or alter their prescription by splitting their tablets or skipping doses to make them last longer. At that point, their private stress becomes a public health issue as well — uncontrolled HIV means the virus can be transmitted to others.”

    The research team’s goal is that their work contributes to evidence that will one day inspire change.

    “Our hope is to see cost equality in accessing essential medications for all, and especially for diseases that affect individuals and the public,” she said.

    These papers are an example of how St. Michael’s Hospital is making Ontario Healthier, Wealthier, Smarter.

    About St. Michael’s Hospital

    St. Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in more than 29 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the Hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael’s Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.

    St. Michael’s Hospital with Providence Healthcare and St. Joseph’s Health Centre now operate under one corporate entity as of August 1, 2017. United, the three organizations serve patients, residents and clients across the full spectrum of care, spanning primary care, secondary community care, tertiary and quaternary care services to post-acute through rehabilitation, palliative care and long-term care, while investing in world-class research and education.

    Even When HIV Prevention Drug Is Covered, Other Costs Block Treatment

    Three years ago, Corey Walsh, who was in a relationship with a man who was HIV-positive, got a prescription for Truvada, a drug approved by the Food and Drug Administration to prevent infection with the virus that causes AIDS.

    Walsh, then 23, was covered by his parents’ health insurance policy, which picked up the cost of the drug. But the price tag for the quarterly lab tests and doctor visits he needed as part of the prevention regimen cost him roughly $400, more than he could afford.

    “I went back to my physician and said, ‘I can’t take this anymore because all these ancillary services aren’t covered,’” Walsh recalled. He ended up joining a clinical trial that covered all his costs.

    Walsh’s experience with high out-of-pocket costs, whether for medication or related services, is common, advocates say. Last month, the U.S. Preventive Services Task Force recommended that clinicians offer prescription pre-exposure prophylaxis, or PrEP, to people at high risk of contracting HIV. The decision by the independent group of experts means that starting in 2021 most health plans are required to cover drugs that are recommended to prevent HIV, and patients can’t be charged anything out-of-pocket for the medication.

    But the recommendation doesn’t apply to the other clinical and lab services people need if they’re on PrEP, according to task force officials.

    In addition to the ancillary charges, other roadblocks persist for people who need PrEP from getting it.

    “Eliminating cost sharing will undoubtedly expand access to individuals for whom affordability has been a significant barrier,” said Amy Killelea, senior director of health systems integration at NASTAD, an organization representing public health officials nationwide. “However, scaling up access to PrEP to individuals who need it most — including young, gay, black and Latino men — will require addressing other major systemic and structural challenges, such as stigma and provider awareness and willingness to prescribe PrEP to their patients.”

    President Donald Trump has emphasized the need for more efforts to fight the HIV epidemic. In his State of the Union address in February, the president vowed to eliminate HIV transmission by 2030.

    Currently, Truvada for PrEP, made by Gilead, is the only drug approved to prevent HIV. The once-a-day pill is at least 90% effective in some high-risk groups, including men who have sex with men as well as heterosexual men and women who have sex with HIV-positive partners, and 70% effective in people who inject illicit drugs.

    Gilead estimated that 200,000 people now receive Truvada. The Centers for Disease Control and Prevention estimated that in 2015 there were 1.1 million people in the United States who could benefit from PrEP.

    With a monthly price tag approaching $2,000, many private health plans have put the drug in a specialty drug tier with high copayments or coinsurance. Those payments will disappear when the task force recommendations take effect in 2021.

    Truvada is generally covered in state Medicaid programs, as is the required clinical and lab work. But in the southern part of the country, where many states have not expanded Medicaid under the Affordable Care Act and HIV infection rates are high, there may be less access to the medication and other services.

    Gilead offers a medication assistance program for uninsured people and a copay assistance program for those with private coverage that can fill gaps.

    Gilead has submitted another HIV drug, Descovy, for FDA approval for PrEP, and a generic version of Truvada is expected next year.

    It’s unclear how these options might affect people’s access to and ability to afford PrEP.

    “Often it takes more than one generic for the price of a drug to drop,” said Jennifer Kates, a senior vice president at the Kaiser Family Foundation. (KHN is an editorially independent program of the foundation.)

    The new preventive coverage requirement may lead to private insurers or Medicaid programs trying to limit access by imposing prior authorization requirements, some advocates worry. Insurers might, for example, require doctors to show that the patient is HIV-negative and meets the risk criteria before approving the prescription. That can have serious repercussions.

    “Anytime there’s a delay at the pharmacy or on the provider’s end, patients will give up,” said John Peller, president and CEO of the AIDS Foundation of Chicago.

    Related Topics

    Cost and Quality Insurance Pharmaceuticals Public Health Drug Costs HIV/AIDS Prescription Drugs Preventive Services Preventive Services Task Force

    Why are HIV meds so expensive, and what can we do about it?

    October 28, 2015 | Reading Time: 6 minutes

    • Emily Land, MA

    Last month, Turing Pharmaceuticals CEO Martin Shkreli sparked outrage in the HIV community—and beyond—by hiking the price of a generic drug used to treat an opportunistic infection by more than 5,500 percent to $750 a pill. Daraprim was approved by the FDA more than 60 years ago to treat toxoplasmosis, a common parasitic infection that can cause severe symptoms in people with HIV or otherwise suppressed immune systems, but was only acquired by Turing in August. Although the price increase was legal, the outcry was loud and Turning’s CEO agreed to lower the price. The debate has escalated to Democratic presidential candidate Hillary Clinton, who has asked the FDA to investigate.

    While the Daraprim example does not fully represent the story of why so many HIV and hepatitis C drugs carry such high price tags, the case brings up complicated, and controversial, questions of how drugs are priced. Why do Americans and their insurers pay more for some drugs and less for others? And who decides what a fair price for a drug should be, and how can manufacturers and health plans be compelled to improve access and affordability?

    To unwrap some of these issues, BETA asked two experts for input: Courtney Mulhern-Pearson, director of state and local affairs for San Francisco AIDS Foundation, and David Evans, a member of the HIV and hepatitis C drug advocacy group Fair Pricing Coalition.

    BETA: I’d like to hear your thoughts about the purchase and price hike of Daraprim. Is it common practice for companies to hike the cost of a drug so dramatically?

    Courtney: Although this has happened before, I wouldn’t say it’s common practice for a company to acquire then dramatically raise the price of a generic drug. But, it does help spur this conversation about the cost of HIV and hepatitis C medications. HIV medications have been costly for a long time, but the costs now are getting so astronomical that the issue is really getting more attention. It’s just not the full story.

    David: I agree. While this isn’t the first time a company bought a generic drug, became the exclusive provider of it, and jacked up its price by tens or hundreds of percent, this instance really struck a chord. I think it was because the CEO was so brazenly unapologetic and not at all deferential. He claimed would be shuffled back into research and development, but that’s something every company says they’re doing with their profit. It’s unverifiable so we can’t trust that this is the case.

    How do pharmaceutical companies set the price for a new medication? Are there any limits on the price they can ask—and get—for it?

    Courtney: We don’t have any national price control in the U.S. That means that there’s no cap on drug prices. We’re a market driven system—so what brings drug prices down is competition. For example, take the two newer hepatitis C drugs Harvoni and Sovaldi. They were priced extremely high for a few reasons. First, they were marketed as a cure, so Gilead Sciences was able to claim that the treatment would be ‘one and done.’ These aren’t maintenance drugs that people will have to take for the rest of their lives so Gilead only profits from an individual person for a short amount of time. Also, there wasn’t any competition from other manufacturers—Gilead was the only company producing and selling a medication cure for hepatitis C. So Gilead was able to set high prices knowing that people would pay it.

    Research and development costs for a new drug are not insignificant. Drug companies want to recoup the money they’ve already spent in addition to make a profit. How does the Fair Pricing Coalition (FPC) decide what a fair price for a drug should be?

    David: On one end of the spectrum, you have people who think that HIV and hepatitis C drugs should produce little to no profit—that drugs should cost under $100 a year because that is how much it costs a generic manufacturer in India to make them. And then you have people on the other side of the spectrum—in the business community—who think that pharmaceutical companies should be able to charge whatever they want. The FPC wants innovation to continue, and so realizes that this has to be a factor in drug pricing. But costs are hidden by industry, making it very difficult to say what is fair. We do our best to estimate the costs of the research, evaluate the price of competitors, if any, and the value of the drug to people living with the disease.

    Invariably, the price we arrive at as fair is almost always quite a bit lower than what it ends up costing. That said, we are often successful at gaining other types of concessions so that the people who need the drugs have access and aren’t gouged at the pharmacy or in their premiums.

    We tell companies that they absolutely cannot bankrupt government programs like ADAP and Medicaid. This is something the new hepatitis C drugs have threatened to do to Medicaid and the VA system. We also say that they should not set prices so high that insurers pass along costs to consumers in the form of high copays, or in the form of restricted access.

    Who actually pays the price of the drug that’s set by the manufacturer?

    Courtney: Health plans negotiate the price that they’ll pay the pharmaceutical companies for each drug—so that’s really where the rub is. Plans that have more buying power—in other words, have more clients who are going to take and pay for the drug that’s being negotiated—are able to negotiate lower prices with the pharmaceutical companies.

    But sometimes health plans aren’t able to negotiate a lower price. When that happens, and the drug price is really high, health plans may put that drug on a specialty tier. This means that the consumer will a higher copay to access the drug. Instead of a $10 per month copay, the consumer might have to pay $50 a month to get the drug. Neither consumers, nor pharmaceutical companies, like it when drugs are put on a specialty tier because it limits access. Keep in mind that health plans are trying to make a profit too—so that’s one reason they will pass on costs to the consumer.

    Federal and state assistance programs like ADAP, Medicare, Medicaid (also known as Medi-Cal in California) also negotiate with pharmaceutical companies. And ADAP actually operates a fairly substantial rebate program.

    What will help bring drug prices down?

    David: One of the things the FPC does is call for transparency. We want to know how much money was put into research and development. How much it actually costs to make and distribute the drug; what kinds of discounts are actually given to payers.

    Lawmakers in Congress could make policy changes that allow the government to step in and regulate drug prices. For instance, by setting reasonable prices for drugs based on their value and other factors. I believe we are one of the only countries in the world where this doesn’t happen, and recently lawmakers and candidates running for President—Hillary Clinton was the most recent—have released policy points to address this.

    We also call on payers to be transparent about their own costs and processes for how they manage access to drugs and the drug copayments that they charge their customers. It’s a two-way street, and so often it is the person living with the disease who gets caught in the middle.

    What advice do you have for consumers that need to access specialty drugs or medications with high copays?

    Courtney: It’s a good time to be thinking about this as we’re leading up to open enrollment and people are considering their health insurance coverage through their employer or Covered California. I think our common refrain is to make sure you know what drugs you’re on and how the plan you’re on or interested in is tiering those drugs. If you’re taking four medications a month that all have a $50 copay, that’s $200 a month you’ll need to budget for. Look at all of your plan options. It might be worth it to pay for a plan with better drug coverage if you’ll pay less in copays every month.

    If you’re HIV-positive, take advantage of programs like ADAP. And if you qualify for patient assistance programs from pharmaceutical companies, take advantage of those, too.

    David: I hope that people will be engaged in the political process and not think of it as a waste of their vote, time or interest. Yes, we have a very dysfunctional government, and it’s very hard to get anything done. But our votes do matter. Because they don’t just shape public policy, they shape what we talk about as a country. And one of the things we know about from polls is that drug pricing is a major concern for all people—Democrat or Republican. Getting involved in the political process and holding our candidates responsible for dealing with drug costs is really important.

    Find more information on patient assistance and co-pay programs for HIV and hepatitis C medications on the Fair Pricing Coalition website.

    • Emily Land, MAEmily Land is the editor-in-chief of BETA blog and content marketing manager at San Francisco AIDS Foundation.

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