The prognosis for people with HIV has changed dramatically over the last 25 years, from almost-certain death to long life with a chronic disease. How comfortable the rest of us feel about being with the HIV-positive hasn't shifted all that much.
That seeming disconnect was brought home recently when the U.S. Attorney's Office in Philadelphia announced the settlement of a discrimination case involving a bariatric surgeon who allegedly refused to meet with a patient with HIV.
Infectious-diseases doctors say the risk of transmission during an operation is close to zero. Since 1999, there has been only one confirmed case in the United States of what researchers call "occupationally acquired infection" among health-care workers of any kind (a needle puncture in a lab technician).
Yet discrimination by doctors against patients "is still pretty prevalent," said Scott Schoettes, senior attorney and HIV project director for Lambda Legal, a national nonprofit that works for the civil rights of lesbian, gay, bisexual, and transgender people, as well as those with HIV.
People with HIV are now living into their 70s and 80s. Their physicians used to be mainly specialists in their disease. Now they need doctors for the same things as everyone else, from heart disease to gall-bladder removal.
The patient in the recent case was a 45-year-old woman from Montgomery County with four grown children. Her primary care doctor had recommended bariatric surgery and referred her in 2013 to a physician at a practice owned by Mercy Suburban Hospital in East Norriton.
After filling out paperwork and waiting to be assessed by the surgeon, "an office assistant came in and said the doctor wouldn't even come to see me," she said in a phone interview last week. The worker told her that "this procedure had never been done before to an HIV-positive patient," she said.
She would have been fine with an explanation of why her condition was an issue, the patient said. It was sending someone else to deliver the news - and making up a story about a never-before-attempted procedure that clearly is done on HIV patients - that upset her.
The woman agreed to an interview on the condition that her name not be used because of a potential "backlash" against her family and friends. No one involved with the case would identify the doctor, who was not part of the settlement between Mercy and the Justice Department. The case alleged violations of the Americans with Disabilities Act.
"Mercy Health System is dedicated to fostering a welcoming, compassionate environment for each and every patient. While we deny any wrongdoing in this case, we are taking the matter seriously and expanded our long-standing anti-discrimination policy to explicitly include persons with HIV," spokeswoman Ann D'Antonio emailed. "All colleagues involved in the treatment of bariatric patients have received additional education on the policy."
Mercy agreed to pay a $5,000 civil penalty and $20,000 to the patient, which includes $2,500 in legal fees to the AIDS Law Project of Pennsylvania, which brought the case.
No one tracks cases like this nationwide. In a 2009 survey that was not random - it was promoted through advocacy groups' websites and events - Lambda asked about patients' experiences with medical providers. Nearly a fifth of respondents with HIV said they had been refused care because of their diagnosis; more than a third said a health-care worker had refused to touch them or used excessive precautions.
A 2012 survey of Americans that was random found that 27 percent believed incorrectly one could catch HIV by sharing a drinking glass - a number virtually unchanged since 1987. Less than half reported they would feel "very comfortable" with an HIV-infected person as a colleague or as their child's teacher. A quarter felt the same about someone who prepared their food, according to the Washington Post/Kaiser Family Foundation poll.
Impressions may date to the early days of AIDS, the disease caused by HIV, when little was known about the infection and the stereotypical wasting disease was usually fatal.
An estimated 1.2 million people in the U.S., including 12,000 in Philadelphia, are now living with HIV. For the vast majority, anti-retroviral drugs have "essentially eliminated the virus from the bloodstream," said Neil O. Fishman, an infectious-diseases doctor at the Hospital of the University of Pennsylvania and former president of the Society for Healthcare Epidemiology of America. That eliminates most of the risk of contagion, he said.
Most Americans, perhaps without knowing it, "are working with people who are HIV-positive and have been in a pool with people are HIV-positive," he said. "I will guarantee that there are chefs in every major city in the country who are HIV-positive."
The risk of blood-to-blood transmission would be slightly higher in the surgical suite, although other viruses are more contagious. Likelihood of transmission of hepatitis B from a needle stick is between 6 percent and 37 percent and hepatitis C is 1 percent to 2 percent, Fishman said. The best estimate for HIV, which was made when drugs were not as effective as they are now at driving down levels of virus in the blood, is 0.3 percent, he said.
Because medical personnel, especially in the ER, don't know who might be infected with what, "universal precautions" have been standard in all cases for more than a decade. They include double gloves and safety devices for "sharps," such as automatic sheaths on needles and scalpels. In the event of a needle stick, HIV drugs administered as "post-exposure prophylaxis" help prevent infection.
John M. Morton, chief of bariatric and minimally invasive surgery at Stanford University and president of the American Society for Metabolic and Bariatric Surgery, agreed there was virtually no risk to physicians from operating on someone with HIV. He said some patients could face increased risk from bariatric surgery - an argument Fishman dismissed as no different from any other condition.
Morton said the discrimination he sees the most is "around obese patients."
Stigma is about more than just hurt feelings, said Ronda B. Goldfein, executive director of the AIDS Law Project of Pennsylvania. "If you had a bad experience you wouldn't go back to the doctor," she said, adding that a potentially chronic condition could become terminal.
Some also worry about discrimination by untrained staff in places like medical spas.
Goldfein's client still hasn't had bariatric surgery, for medical reasons. She said her new doctors at Penn expressed no concerns about HIV.
Until this experience, she said, she had faced little discrimination since her diagnosis 12 years ago.
"I hear people making comments," she said. "I've never had that kind of blatant, outright, in-your-face discrimination before. It shocked me that it was coming from a doctor, a surgeon of all things."