Medicare and People with HIV
- In 2020, more than a quarter (28%) of people with HIV in the U.S. were estimated to be covered by Medicare, the federal health insurance program for people age 65 and older and for younger adults with long-term disabilities. Medicare covers a range of services that are important to people with and at risk for HIV, including prescription drugs, inpatient and outpatient care, and preventive services.
- The number of traditional Medicare beneficiaries with HIV has more than doubled since the 1990s, increasing from approximately 42,500 in 1997 to more than 100,000 in 2020. The total number of Medicare beneficiaries with HIV is likely substantially larger as this estimate does not include beneficiaries enrolled in Medicare Advantage plans. (Roughly half of all Medicare beneficiaries are enrolled in such a plan.)
- Medicare is the second largest source of federal financing for HIV care and treatment in the U.S., accounting for 39% of federal spending on care and treatment for people with HIV in FY2020.1 Spending has increased over time due in large part to the introduction of the Part D prescription drug benefit in 2006, as well as an increase in the number of Medicare beneficiaries with HIV, and the rising cost of care and medication used by people with HIV.
- Compared to the traditional Medicare population overall, Medicare beneficiaries with HIV are disproportionately under age 65 (13% vs. 61%), male (45% vs. 75%), Black (8% vs. 39%), and Hispanic (6% vs. 12%). They are also more likely to originally qualify for Medicare based on disability rather than age (22% vs. 77%).
Medicare, the federal health insurance program for people age 65 and older and for younger adults with long-term disabilities, covers over 65 million people and plays in important role in delivering health coverage to people with HIV. In 2020, 28% of adults with HIV in the U.S. were estimated to be covered by Medicare, according to the Centers for Disease Control and Prevention’s Medical Monitoring Project, a nationally representative survey of adults with HIV. This includes both those in traditional Medicare and Medicare Advantage, which are private health plans, such as HMOs and PPOs, that cover all Medicare-covered benefits. Medicare covers inpatient and outpatient hospital services, physician services, and prescription drugs, among other services, that are important to people living with HIV, as well as prevention services, such as pre-exposure prophylaxis (PrEP) that are important to people at risk for HIV.
Medicare Beneficiaries with HIV
The profile of Medicare beneficiaries with HIV is different from that of Medicare beneficiaries overall. (Unless otherwise noted, findings described here are representative of traditional Medicare beneficiaries only and do not include beneficiaries enrolled in Medicare Advantage plans.2,3):
- The number of traditional Medicare beneficiaries with HIV has more than doubled since the mid-1990s, rising from 42,500 in 1997 to 103,400 in 2020 (a 143% increase). The increase in the number of Medicare beneficiaries with HIV is due to several factors, including advancements in HIV treatment leading to longer lifespans for people with HIV as well as a steady number of new infections in the population overall. Despite this increase, Medicare beneficiaries with HIV make up less than half of one percent of the Medicare population.
- When compared to Medicare beneficiaries overall, beneficiaries living with HIV are disproportionately under age 65 (13% vs. 61%), male (45% vs. 75%), Black (8% vs. 39%), and Hispanic (6% vs. 12%). (Figure 1)
- A substantially larger share of Medicare beneficiaries with HIV are dually enrolled in both Medicare and Medicaid compared to Medicare beneficiaries overall (61% vs 18%). For low-income Medicare beneficiaries who qualify for Medicaid based on their income and resources, Medicaid provides assistance with Medicare premiums, and in many cases, cost sharing. Most dually enrolled beneficiaries are eligible for full Medicaid benefits, including long-term services and supports. Dually enrolled Medicare beneficiaries are among the most chronically ill and highest cost
- Relative to Medicare beneficiaries overall, beneficiaries with HIV have a higher prevalence of certain behavioral health conditions and other chronic diseases (Figure 2).
- Nearly half (47%) of Medicare beneficiaries with HIV have a diagnosed mental health condition, compared to fewer than one-third (29%) of Medicare beneficiaries overall. One-third (33%) have a diagnosis of depression compared to one in five (19%) in the overall Medicare population. More than one in five Medicare beneficiaries with HIV have been diagnosed with a substance use disorder, four times the rate among beneficiaries overall (21% vs. 5% overall), including alcohol-use disorder (7% vs. 2% overall) and opioid use disorder (8% vs. 2% overall), and they are nearly three-times more likely to use tobacco products (28% vs. 9% overall). (All data not shown in chart.)
- Fifteen percent (15%) of Medicare beneficiaries with HIV also have a viral hepatitis diagnosis (including hepatitis types A-E), compared to 1% of the overall Medicare population. While viral hepatitis remains a persistent comorbidity, the share of beneficiaries with both HIV and viral hepatitis has declined in recent years (down from 21% in 2015), likely due to the availability of curative treatment, such as Sovaldi, introduced in 2013. Beneficiaries with HIV have liver disorders at twice the rate of the overall Medicare population (11% vs. 5%), and about one in four (38%) have chronic kidney disease compared to a quarter (26%) of the overall Medicare population.
- Even though Medicare beneficiaries with HIV are younger than Medicare beneficiaries overall, they experience other common comorbidities at similar rates to the overall Medicare population, including hyperlipidemia (47% vs. 48%) and hypertension (54% vs. 56%)
Medicare Eligibility for People with HIV
The three main pathways to Medicare eligibility for all individuals are based on age, disability status, and disease state, and in most cases require an individual to have sufficient work credits based on their own or family employment history (see Table 1).
|Table 1: Medicare Eligibility Pathways for People with HIV|
|Eligibility Category||Eligibility Criteria||Impact on People with HIV|
|Individuals age 65 and older||Individuals must be at least age 65 and they or their spouse must have a sufficient number of work credits (40 quarters) to qualify for Medicare.||As more people with HIV live to older ages, due primarily to effective antiretroviral therapy and subsequent increased lifespan, they are increasingly likely to qualify for Medicare coverage based on age.|
|Individuals under age 65 with a long-term disability||Individuals may qualify for Medicare before age 65 if they first qualify for Social Security Disability Insurance (SSDI) and have received SSDI payments for at least 24 months. To be eligible for SSDI, an individual must have a disability that prevents work for one year or more or is expected to result in death, and must have a sufficient number of work credits, based on their age.||The primary pathway to Medicare for people with HIV is through SSDI. However, the share qualifying for Medicare through this pathway has declined over time as the population of people with HIV ages, more effective HIV treatments are available and guidelines suggest treatment as early as possible following diagnosis, all of which can prevent disability.|
|Individuals with End-Stage Renal Disease (ESRD) or Amyotrophic Lateral Sclerosis (ALS)/Lou Gehrig’s disease||Individuals younger than age 65 may qualify for Medicare if they have ESRD or ALS, and do not face a 24-month waiting period.||HIV and some of its treatments are associated with renal complications, including ESRD, and some people with HIV qualify for Medicare due to ESRD.|
As of 2020, nearly eight in ten (77%) HIV positive Medicare beneficiaries originally qualified for Medicare via a disability pathway, primarily as recipients of Social Security Disability Insurance (SSDI) (although some may have qualified due to end stage renal disease (ESRD) or amyotrophic lateral sclerosis (ALS)). By comparison, 22% of traditional Medicare beneficiaries overall originally qualified through these pathways, some of whom are now over the age of 65. Because the HIV population is aging due to effective HIV treatment, a growing share is qualifying for Medicare based on age, rising from 14% in 2015 to 23% in 2020.
Medicare Spending on People with HIV
In FY 2022, Medicare spending on people with HIV was estimated to total $11.3 billion (including both traditional Medicare and Medicare Advantage)4, representing 39% of federal spending on HIV care (Figure 3), but just 1.2% all Medicare spending.5 With the introduction of the Part D prescription drug benefit in 2006, Medicare spending on HIV care substantially increased and for a period surpassed that of Medicaid. This is largely because the implementation of Part D shifted coverage of prescription drugs for dually enrolled beneficiaries.
Medicare spending on beneficiaries with HIV has increased over time, as the number of beneficiaries with HIV and the cost of medical care and antiretrovirals (ARVs) has grown. The following estimates reflect spending for beneficiaries in traditional Medicare enrollees only, because data on spending by type of service for beneficiaries in Medicare Advantage are not available.6
- Average per capita Medicare spending for beneficiaries with HIV increased 32% between 2013 and 2020 (from $42,423 to $55,791), compared to 18% for beneficiaries overall (not adjusted for inflation). In 2020, per capita spending on beneficiaries with HIV was 4 times higher than for beneficiaries overall ($13,456 compared to $55,791) (Figure 4).
- Nearly two-thirds (63%, or $35,303) of Medicare spending for beneficiaries with HIV in 2020 was for Part D prescription drugs. Between 2013 and 2020, average prescription drug spending for people with HIV increased 52%. While this is the same increase as for beneficiaries overall, absolute increase is still substantially higher for those with HIV. In 2020, average per capita Part D spending was 14-times higher for those with HIV than for Medicare beneficiaries overall (Figure 4).
- Medicare per capita spending on certain other medical services for beneficiaries with HIV is also higher than per capita spending among traditional Medicare beneficiaries overall, including for inpatient services, physician services, outpatient services, and skilled nursing facilities (see Figure 4).
Medicare covers many health care services important to people living with, and at risk for, HIV, including hospital care, physician services, prescription drugs, and prevention services. Medicare benefits are organized and paid for in different ways and are separated into four parts (see Table 2).
|Table 2: Medicare Benefits|
|Part A (Hospital Insurance)||Inpatient hospital services, skilled nursing facilities, home health visits, and hospice care|
|Part B (Medical Insurance)||Physician, outpatient, preventive services (including HIV screening), physician administered drugs (including some HIV treatment and prevention medications), and home health visits|
|Part C (Medicare Advantage)||Private plans (primarily HMOs and PPOs) that contract with Medicare to provide Part A, Part B, and, in most cases, Part D, to enrollees|
|Part D (Prescription Drug Benefit)
|Voluntary outpatient prescription drug benefit delivered through stand-alone prescription drug plans (PDPs) or Medicare Advantage Prescription Drug Plans (MA-PDs) that contract with Medicare; additional premium and cost-sharing assistance for beneficiaries with low incomes and modest assets; all plans are required to cover all antiretrovirals (ARVs) – except those covered through Part B|
Services that are particularly important for people with HIV include:
- Prescription drugs:
- Part D: The addition of the Part D benefit to Medicare in 2006 marked an important change for beneficiaries, especially those with illnesses and chronic conditions treated with costly medications, including people with HIV. Part D plans are required to cover all approved antiretrovirals (ARVs), consistent with CMS guidelines and codified in law by the ACA, designating ARVs as one of the so-called “six protected drug classes.” Despite this coverage requirement, Part D enrollees face cost-sharing for these drugs, which can be expensive, but those who qualify for the Part D Low-Income Subsidy pay nominal cost-sharing amounts. The recently passed Inflation Reduction Act included several provisions to lower out-of-pocket spending under Part D, such as a cap on out-of-pocket drug spending that takes effect in 2024.
- Part B: Some ARVs used to treat and prevent HIV are physician-administered injectables, which are covered under Part B. Drugs covered under Part B are subject to a 20% coinsurance requirement. Beneficiaries with supplemental coverage, such as Medicaid or Medigap, may not be responsible for the 20% coinsurance.
- Facial wasting (lipoatrophy) treatments: Since 2010, Medicare has covered FDA-approved facial wasting (lipoatrophy) treatments for beneficiaries who have experienced depression as result of facial lipoatrophy caused by antiretroviral drug use.
- HIV testing: In 2015, Medicare expanded access to HIV testing by covering an annual voluntary test for all beneficiaries between the ages of 15 and 65, regardless of perceived risk, without cost-sharing. Those under age 15 and over age 65 are also covered if they are at increased risk, which is defined to include anyone who asks for a test. Pregnant beneficiaries are also explicitly covered for HIV screening.
- Pre-exposure Prophylaxis (PrEP): For individuals who are higher risk for HIV, use of pre-exposure prophylaxis medication, or PrEP, is a highly effective option to prevent infection. ARVs used for PrEP are covered under both Medicare Part D for oral medications (Truvada, Descovy, and generics) and Part B for injectable physician-administered medications (Apretude).
Financial Assistance for Medicare Beneficiaries with HIV
Accessing benefits under Medicare can pose affordability challenges for some beneficiaries, particularly those with modest incomes. Medicare has relatively high cost-sharing requirements, no cap on out-of-pocket spending under traditional Medicare for services covered under Parts A and B, and does not cover all services that may be important for people with HIV, such as long-term services and supports and dental services. As a result, many beneficiaries, including those living with HIV, have various sources of supplemental coverage and/or benefit from certain financial assistance programs for people with low incomes.
- As noted earlier, Medicaid provides financial assistance to help pay Medicare premiums and, in many cases, cost sharing for low-income dually enrolled beneficiaries. For most dually-enrolled beneficiaries, Medicaid also covers benefits that Medicare does not, most notably long-term services and supports.
- Part D offers premium and cost-sharing assistance for beneficiaries with low incomes and modest assets through the Part D Low-Income Subsidy (LIS) program, including for 74% of Medicare Part D beneficiaries with HIV in 2020. The large share of Part D enrollees with HIV who qualify for LIS is likely due to the large share of beneficiaries with HIV who are dually enrolled in Medicare and Medicaid, who automatically receive the LIS.
- The Ryan White HIV/AIDS Program, the nation’s safety net program for people with HIV, can also assist eligible Medicare beneficiaries with HIV with health coverage expenses and provide support services not covered by Medicare, including for HIV and medical case management and subsistence services, among others. Medicare beneficiaries with HIV who also have Ryan White support, have higher rates of viral suppression than beneficiaries without Ryan White support (73% v. 58%). As of 2020, nearly all of the state-based AIDS Drug Assistance Programs (ADAPs), the drug and insurance component of the Ryan White Program, were assisting low- and moderate-income Medicare beneficiaries with HIV with at least some costs associated with HIV care and treatment, though direct help with premiums is challenging.7
On August 16, 2022, President Biden signed the Inflation Reduction Act into law. The law included several provisions to address the high cost of prescription drugs for people with Medicare, in particular requiring the federal government to negotiate the price of certain high-cost drugs; requiring drug companies to pay rebates to the federal government if drug prices rise faster than inflation; and capping out-of-pocket drug spending for Medicare beneficiaries starting in 2024. The law also expanded eligibility for full benefits under the Medicare Part D LIS program. Given that people with HIV are disproportionately low income and the cost of ARVs is high, expanded eligibility for full LIS benefits along with the out-of-pocket relief from the out-of-pocket spending cap could be especially impactful for this population and could also limit costs for the Ryan White Program.
Additionally, the requirement for drug companies to pay rebates if prices rise faster than inflation for drugs used by Medicare beneficiaries could have implications for antiretroviral drug pricing. For example, a KFF analysis compared price changes for drugs covered by Medicare Part B (administered by physicians) and Part D (retail prescription drugs) between 2019 and 2020 to the inflation rate over the same period. The analysis found that Biktarvy, an antiretroviral which in 2022 accounted for 45% of the overall U.S. ARV market share, was among the top 25 drugs covered by Part D with the highest total gross spending and one of 23 drugs that had price increases greater than inflation in 2020, illustrating how ARV pricing could be impacted moving ahead.
Medicare, the second largest source of federal spending on care and treatment for people with HIV, will likely play an increasingly important role for these individuals as they age, due to treatment effectiveness and as new infections continue to occur. As such, it will be important to continue to monitor how changes in the Medicare program, and the other programs that serve them, could affect coverage and costs for people living with and at risk for HIV.
|Unless otherwise noted, data on the number, characteristics, and spending of Medicare beneficiaries with HIV in this fact sheet are based on KFF analysis of 2020 data from a 20% sample of Medicare beneficiaries from the Chronic Conditions Data Warehouse (CCW) of the Centers for Medicare & Medicaid Services (CMS). The analysis is limited to Medicare beneficiaries in traditional Medicare because data on chronic conditions and spending for beneficiaries in Medicare Advantage is not available. This means we are not able to identify the population of beneficiaries with HIV enrolled in Medicare Advantage plans. Overall, in 2020, beneficiaries in traditional Medicare account for 58% of all Medicare beneficiaries.|
Lindsey Dawson, Jennifer Kates, Tatyana Roberts, Juliette Cubanski, Tricia Neuman are with KFF. Anthony Damico is an independent consultant.
Calculation based on KFF review of Congressional Budget Justifications, other budget documents, and personal agency correspondence.
This exclusion is because data on the chronic conditions of beneficiaries in Medicare Advantage plans is not available.
Findings are based 2020 Medicare claims data from a 20% sample of Medicare beneficiaries from the Centers for Medicare & Medicaid Services Chronic Conditions Data Warehouse.
Medicare spending estimate received via personal data request from CMS and is inclusive of those enrolled in both Traditional Medicare and Medicare Advantage. Amounts are pre-rebate.
Calculation based on KFF review of Congressional Budget Justifications, other budget documents, and data request from CMS.
Note that the drug spending levels described in this factsheet are pre-rebate spending amounts
It is technically difficult for ADAPs to assist with premiums as those are deducted social security payments, and ADAPs cannot provide clients with cash reimbursements.