State’s steps to control HIV seen as model for nation
Massachusetts residents with HIV are twice as likely as patients nationally to have the disease under control, according to a report from the state Department of Public Health with wider implications for other states and nations seeking to curb the spread of the virus.
The Massachusetts findings, drawn from laboratory blood samples of every person diagnosed with HIV since the start of the epidemic, follow a federal government report late last year showing that in two-thirds of Americans with HIV, the virus was not being suppressed with medication.
In Massachusetts, the opposite is true: Almost two-thirds of people with HIV have the illness fully in check, with the virus at extremely low levels in their blood. The measures taken by the state to control the virus — near-universal health coverage and a robust network of social services — could serve as a national model.
Health officials and patient advocates said the payoff extends beyond those infected with HIV: People who suppress the virus with medication are unlikely to transmit it to others. In Massachusetts, the rate of new HIV infections has declined 37 percent since 2002.
“The traditional barriers to care — ‘I can’t afford it,’ ‘I can’t find a doctor,’ ‘I can’t get to the doctor’ — are not here in Massachusetts,” said Kevin Cranston , director of the Bureau of Infectious Disease at the health department.
Massachusetts also addresses other daunting barriers — homelessness, mental illness, and addiction — with a network of case managers, nurses, and peer counselors who help get people into care and keep them engaged.
The new data result from regulations requiring clinical laboratories to report immune-cell counts and HIV viral loads from blood tests conducted on people infected with HIV.
“This is the first time we have a statewide snapshot,” said Dawn Fukuda, director of the state office of HIV/AIDS.
The virus was suppressed in 64 percent of the 18,570 people living with HIV in Massachusetts at the start of 2014. Among those who were especially engaged with medical care, the percentage was even higher, reaching 87 percent for those who had obtained two laboratory tests in a year.
“If you can keep people healthy, keep them out of the hospital, and keep other individuals from getting HIV in the first place, it’s an investment that more than quadruples its value,” Cranston said.
The Massachusetts figures contrast with a report in November from the US Centers for Disease Control and Prevention , looking at 2011 data on the 1.2 million people estimated to be living with HIV in the United States. Of those, 1 million had been diagnosed with HIV, but only 35 percent had suppressed the virus. Although the data are two years older than the Massachusetts figures, officials believe they are roughly comparable.
The federal report did not provide state-by-state comparisons.
The CDC estimates that 14 percent of Americans with HIV do not know they are infected. Massachusetts does not have a similar estimate of people infected but untested, but officials said they believe it is lower than 14 percent.
The state’s enhanced support of HIV patients began in 2001, when Medicaid was expanded to cover low-income people with HIV. A network of community health centers and the state’s academic hospitals have long offered up-to-date care. The landmark 2006 health care law further expanded access to health insurance. In addition to Medicaid costs, Massachusetts spends $32.1 million a year on its Office of HIV/AIDS, which awards contracts for prevention, education, treatment, and case management.
“In Massachusetts, it’s virtually impossible for somebody not to be able to afford the medication,” which costs about $15,000 a year, said Dr. Kenneth H. Mayer, a longtime AIDS doctor and researcher at Fenway Health, which focuses on health issues related to the lesbian, gay, bisexual, and transgender community.
When the first effective treatments for HIV became available in the 1990s, patients faced a complicated regimen of 20 pills and often suffered debilitating side effects.
Today, HIV patients can take one pill, a combination of three medications, to suppress the virus to the point that they have no symptoms and the virus cannot be detected in their blood. For many, side effects are minimal and often short-lived.
“If I didn’t take a pill every day, I wouldn’t know I have HIV,” said Carl Sciortino, a former state lawmaker who now is executive director of the AIDS Action Committee of Massachusetts, a social service agency.
But he stressed that HIV care involves more than swallowing that pill. People need to connect with a physician, come for regular appointments, and maintain a schedule of blood tests.
For patients who are mentally ill or addicted to drugs, who don’t know where their next meal will come from or where they will sleep at night, such consistency and organization can be close to impossible. And seeing a doctor is not likely to be high on their list of urgent concerns.
To ease the way, Sciortino said, “case managers meet one-on-one with clients. . . . They will do as much as they need to, to get that client comfortable going to doctors offices, scheduling appointments, addressing all the other barriers to having that person successfully stay in care.”
But that net doesn’t catch everyone. The flip side of the positive statistics is that as many as 36 percent of people diagnosed with HIV in Massachusetts may not be getting optimal care. Mayer speculates that some may not have heard that treatment has improved.
“They just see HIV as another cross to bear,” he said. “They may just be already fearful or pessimistic.”
Sex between men is the primary mode of HIV transmission in Massachusetts, followed by intravenous drug use and, especially for women, heterosexual sex. Disproportionate numbers of blacks and Hispanics have been diagnosed with the virus. For example, in 2012, 24 percent of men with HIV and 45 percent of women with HIV were black; only about 8 percent of the total population is black.
Dr. Bisola O. Ojikutu, an HIV specialist at Massachusetts General Hospital, recalls a patient who knew he had HIV but was mostly concerned about finding a place to live. It was his quest for shelter that eventually linked him to HIV care.
A persistent barrier, even in Massachusetts, is the stigma associated with HIV. “I know people with HIV that are open about being gay and have overcome a lot of life challenges,” Sciortino said, “and are closeted about having HIV.”
Ojikutu said stigma — against HIV and against homosexuality — is especially acute in some immigrant communities and among African-Americans.
“I have a number of patients who have not disclosed to their family members,” shesaid, “just because of the fear they will be rejected, the fear that they will be considered dirty, really not be welcomed within their families.”
Correction: An earlier version of this story contained a graphic that incorrectly labeled the rates of death and diagnosis of HIV infection.