The ACA makes a measureable difference with HIV coverage

People with HIV experienced significant coverage gains under the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) as a result of Medicaid expansion, the creation of the health insurance marketplaces, and the elimination of pre-existing condition exclusion. According to a Kaiser Family Foundation (KFF) Issue Brief, as long as the future of the ACA remains uncertain, those access and coverage gains are at risk.


To develop a baseline for understanding current access to care for people with HIV, KFF examined multiple variables across the three main pathways for HIV coverage and care: (1) Medicaid, (2) private insurance and the ACA marketplace, and (3) the Ryan White HIV/AIDS program. KFF considered factors like states’ Medicaid expansion status, the number of health insurance issuers per county, and AIDS Drug Assistance Program (ADAP) eligibility levels.


Prior to the ACA’s Medicaid expansion, most individuals with HIV obtained Medicaid coverage through the disability pathway, meaning that coverage was often not obtained prior to a beneficiary’s development of AIDS. Currently, 62 percent of people with HIV live in a Medicaid expansion state, where care is more likely to be accessible through the income pathway, regardless of disability level. Additionally, 24 states provide Medicaid coverage through the disability pathway above the federally mandated level of 73 percent of the federal poverty level (FPL).


In 33 states, where 83 percent of people with HIV live, there are three or more issuers in the ACA marketplace. While five states—Arkansas, Oklahoma, South Carolina and Wyoming—had only one issuer in 2017, some states had several. For example, Wisconsin had 15 insurers, New York had 14, and California had 11. KFF also looked at issuer representation in counties with high incidence of people with HIV. While 43 percent of people with HIV live in one of the eighteen (18) states with an average of three or more issuers per county, the majority of people with HIV—57 percent—live in one of the 33 states with less competition—one or two issuers per county.

Ryan White

The Ryan White HIV/AIDS Program provides outpatient HIV care and treatment to low and moderate income individuals. The program serves more than half of the people diagnosed with HIV in the country. The average eligibility level for the medication assistance program is 386 percent FPL. While 17 states use an eligibility level of 400 percent, 72 percent of people with HIV live in a state with eligibility levels at or above the national average. While the Ryan White program would continue to operate with an ACA repeal, many individuals currently covered by marketplace or Medicaid plans would likely turn to the program for coverage. Due to the program’s limited resources, KFF estimates that such an over-reliance could cause individuals to lose access to care.

Highlight on Iowa: Update on West Nile, Zika, and HIV diagnoses

The Iowa Department of Public Health (IDPH) recently announced the first human West Nile virus cases of 2016, that new HIV diagnoses were up 27 percent in 2015, and that 13 Iowans were infected with Zika in summer 2016.

West Nile

The IDPH announced that testing at the State Hygienic Laboratory (SHL) in Iowa has confirmed the first human cases of West Nile virus disease in 2016. A female child (0-17 years of age) and an adult male (41-60 years of age), both of Sioux County, were hospitalized due to the virus but are now recovering. “These cases serve as a reminder to all Iowans that the West Nile virus is present and it’s important for Iowans to be using insect repellent when outdoors,” according to IDPH Medical Director, Dr. Patricia Quinlisk.

Iowans are advised by the IDPH to: (1) use insect repellent with DEET, picaridin, IR3535, or oil of lemon eucalyptus (DEET should not be used on infants less than two months old and oil of lemon eucalyptus should not be used on children under three years old); (2) avoid outdoor activities at dusk and dawn; (3) wear long-sleeved shirts, pants, shoes, and socks whenever possible outdoors; and (4) eliminate standing water around the home.

Since West Nile first appeared in Iowa in 2002, it has been found in every county in Iowa, either in humans, horses, or birds. The virus peaked in 2003, when 141 were sickened and six died. In 2015, 14 cases of West Nile virus were reported to IDPH. The last death caused by West Nile virus was in 2010, and there were two deaths that year.


According to a August 12, 2016 Zika virus update from IDPH, the mosquitoes that are transmitting Zika virus in Central and South America and threatening parts of the southern United States are not established in Iowa, so the risk to Iowans occurs when they travel to Zika-affected areas. The Centers for Disease Control and Prevention (CDC) has issued Level 2 travel alerts to Zika-affected areas advising travelers to take measures to prevent mosquito bites. Thirteen Iowans have been confirmed to have Zika in summer 2016, but all were believed to be infected while traveling in affected regions.


The IDPH annual HIV Surveillance Report for 2015 finds there were 124 new HIV diagnoses in 2015, an increase of 27 percent from the 98 cases reported in 2014. This increase marks a return to the levels seen in 2013, and is a reversal from the drop in cases from 2013 to 2014.

The IDPH speculates that since 2014 was the first year of full implementation of the Affordable Care Act (ACA), it is possible that fewer HIV tests were performed because providers were dealing with the influx of new patients, leading to fewer confirmed cases. The 2015 increase may be because providers were more prepared for the increase in patients, and were more likely to perform HIV testing. This speculation is supported by the fact that the largest diagnoses decreases in 2014 and increases in 2015 occurred in private physician offices, hospital-based clinics, and community health centers (compared to public test sites, correctional settings, and blood banks).

Of the 2,367 diagnosed persons (both in and out of care) in Iowa, 76 percent were virally suppressed.  Nationally, an estimated 42 percent of persons diagnosed with HIV (both in and out of care) had attained viral suppression, so Iowa does very well by comparison.

In addition, the IDPH reports that the number of deaths among HIV-infected persons diagnosed in Iowa continues to decrease since peaking at 103 deaths in 1995. Since 2000, the number of deaths has fluctuated from a low of 20 to a high of 44.  Preliminary data indicate 20 HIV or AIDS-related Iowa deaths in 2015.

IDPH and its community partners are currently creating Iowa’s 2017-2021 Comprehensive HIV Plan, which will be released in fall 2016.

Coverage, treatment improves for individuals with HIV

Individuals with HIV are more knowledgeable about their health insurance options than they were in 2014, and many are receiving care that meets their needs, according to a report by the Kaiser Family Foundation (KFF). While those who gained coverage under the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) reported using their coverage regularly to treat their HIV, the expansion of Medicaid in states that have not yet done so would improve the health of HIV-positive individuals in those states. While the Ryan White program helps them manage their HIV, other health issues are going unaddressed.

The ACA and individuals with HIV

The ACA expanded access to affordable health insurance to millions of Americans, including those with HIV. Many individuals with HIV faced exclusions and other discriminatory road blocks in gaining health insurance before the ACA. Provisions that largely affected individuals with HIV include the creation of health insurance marketplaces and the availability of subsidies, the expansion of Medicaid in certain states, prohibitions on discriminatory market practices such as rate setting based on health status, preexisting condition exclusions, and the use of annual and lifetime coverage limits.

KFF studied focus groups of HIV-positive individuals in California, Florida, Georgia, New York, and Texas in mid-2014 to examine the care experiences under the ACA of people with HIV. As a follow-up, KFF took a second look at the same focus groups to see how the ACA affects individuals with HIV two years later. The focus groups consisted of HIV-positive individuals who gained health insurance coverage through marketplaces or Medicaid expansion, as well as those who remained uninsured because they fell into the coverage gap.

Increased understanding and security

KFF found that, in 2014, participants with new insurance coverage were in the early stages of learning how to use their insurance. In this round of research, participants reported that they used their coverage regularly to meet their care and treatment needs. The participants also reported that their health was easier to manage after gaining coverage and that they found relief and security in being covered. However, some still worried about being able to maintain coverage. However, those with Medicaid find recertification to be stressful.

Knowledge of insurance

Despite being better able to navigate using insurance compared to their 2014 counterparts, some participants remained unsure of how to fully assess plan options and, thus, relied on case managers to help them make enrollment decisions. These individuals continued to lack some basic insurance literacy, but KFF found that the individuals were more knowledgeable about how access to health care varied across the U.S.

Medicaid expansion

Individuals in states that did not expand Medicaid who remained uninsured because they fall into the coverage gap feel like they can meet their care and treatment needs through the Ryan White Program, but they feel like other health problems are unaddressed. Nearly every participant—especially those with past Medicaid coverage—said if their state later expanded Medicaid, they would enroll.

Johns Hopkins ready to begin organ transplants between HIV-positive donors, recipients

The slow approval process for green-lighting HIV-positive organ transplants has finally reached its end for Johns Hopkins University. The institution is prepared to be the first in the U.S. to perform an HIV-positive kidney transplant, and the first ever to do such a liver transplant.

HOPE for patients

The whole process started with the HIV Organ Policy Equity Act (HOPE Act) (P.L. 113-51), signed into law in 2013. This law directed HHS and the Organ Procurement and Transplantation Network (OPTN) to establish standards involving HIV-positive organ transplants. Prior to this act, the use of HIV-positive organs in transplants was a federal crime.

The HOPE Act was created after South Africa began pursuing HIV-positive to HIV-positive organ donation and experienced success. A 2012 article in the South African Medical Journal emphasized that emerging economies were not able to provide dialysis to all patients who needed it, and noted that the availability of deceased donor organs at a major South African hospital had decreased by half over the most previous decade. The authors, one a transplant surgeon and the other a specialist in HIV medicine, found that HIV-positive donor kidney transplants for HIV-infected recipients was a viable alternative to dialysis or seeking organs from donors who were not HIV-positive.

The authors responded to concerns that donor kidneys could infect the patients with a slightly different strain of the virus by noting that highly active antiretroviral therapy (HAART) is effective at suppressing all clades of HIV. They agreed that drug-resistance rates would inevitably increase, and that there was a concern about transmission of a drug-resistant virus. However, they noted that they would eventually use donor virus genotyping in an effort to suppress resistant viruses.

National Institutes of Health criteria

Following the passage of the HOPE Act, HHS published safeguards and criteria developed by the National institutes of Health (NIH) (Notice80 FR 73785, November 25, 2015). The criteria established that these transplants must be done under institutional review board (IRB)-approved protocol, and must comply with regulations governing human research. The hospital transplant team must have HIV program expertise, experience with HIV-negative to HIV-positive organ transplants, and standard operating procedures and training for handling HIV-positive patients, organs, and tissues. All HIV-positive deceased donors must show no evidence of invasive opportunistic complications of HIV infection, and a pre-implant donor organ biopsy must be completed. If an HIV-positive living donor wishes to participate, the HIV infection must be well-controlled (as further defined in the criteria). The criteria also specifies certain aspects for the required health status for all donors, as well as wait list candidates.

Despite commenter concerns that living donors infected with HIV would be at a higher risk for renal and/or liver disease, HHS noted that the decision should be left up to the living donor/recipient pair following a “rigorous, transparent education and informed consent process.” HHS also identified various questions that could be addressed through future research, such as HIV superinfection, incidence of opportunistic infections, reasons for increased rates of kidney rejection, and outcomes of living donors.

Johns Hopkins

Johns Hopkins is ready to begin finding answers to these questions. An associate professor of surgery at the Johns Hopkins School of Medicine estimated that about 500-600 HIV-positive organ donors could save over 1,000 lives each year. The impact of the implementation of the HOPE Act is significant for many HIV-positive patients, as increased organ availability decreases the likelihood that they will die while on the waiting list or become too sick to survive a transplant. CNN reports that 121,000 patients were on a transplant list in 2014, and only one in four received a needed organ.