Disclosure

By Cassandra Bent

It’s one of the most difficult challenges people living with HIV face, but it is also considered very important for prevention. Disclosure has become an ethical issue regarding both the privacy of those infected with HIV and the deterrence of spreading the virus others.

Some people find it very difficult to disclose their status to family members, where as others see it as an easier task. Some people receive positive, supportive feedback when disclosing their status, and others are not as lucky.

For Linda Booi (name has been changed), disclosing her status resulted in isolation from her family. Ms. Booi shared her story online, explaining that although she told her family, they were not supportive. Her mother cried, and her father told numerous other people. Having to be hospitalized for depression, Linda Booi is now able to tell her story with a new, positive outlook.

“I believe disclosing is a healing process. You get used to talking about the virus and you accept it yourself. The virus has changed my life for the better,” wrote Linda Booi.

Alistair Martin lived for years in silence about his HIV status, and also about his sexual orientation.

“But I had to break out in order to live: I was choking on the words I couldn’t say, and suffocating in a closet which confined and stifled life,” he wrote in an online article.

┬áHe did not tell his parents for 9 years, but when he did disclose his status, his parents offered “unconditional love.” He admitted that this was important for the “emotional healing surrounding the disease.”

One of the most important aspects of disclosure as it pertains to the spread of HIV is also one of the most never wracking times for those living with the virus. Many people find it very difficult to disclosure their status to sexual partners.

The U.S. Centers for Disease Control and Prevention conducted a study in 2003 and published the findings in a Medical News article.

They found that the vast majority of participants living with HIV thought the health department should offer to help them notify their partner about their status.

Doctors also deal with disclosure. In some cases, medical professionals question what their rights are and what their patient’s privacy rights are.

In the LA Times article “Troubled Messenger,” Doctor Marc Siegel wrote about one dilemma he faced regarding HIV disclosure. One of his patients tested positive for HIV, but Dr. Siegel also treated this patient’s partner. He did not know whether he had the right to tell the third party.

“When a patient tests HIV-positive, a doctor has to navigate state law and medical ethics. It can be a rocky path,” wrote Dr. Siegel.

What exactly is the law? In Dr. Siegel’s article he discusses it. According to the American Medical Association’s Code of Ethics: “If a physician knows that a seropositive individual is endangering a third party, the physician should, within the constraints of the law (1) attempt to persuade the infected patient to cease endangering the third party; (2) if persuasion fails, notify authorities; and (3) if the authorities take no action, notify the endangered third party.”

One 26 year old mother told her traumatic story in an HIV peer forum, and much response followed. Along with feedback from peers, an article was written about the matter.

What is her story? In a condensed version, the woman was no longer with the father of her 6 year old child, and had started seeing a new man. After getting very sick and being hospitalized, she found out she was HIV positive. The woman told her family right away, and told her child’s father, figuring he was the person who infected her.

Although she was nervous, she was honest with her new partner and disclosed her status to him. Later she found out that he had been living with the virus for 15 years, and knew he had it. After delving further, the woman found out he had infected other women as well.

Disclosure is often difficult for people living with HIV, their friends and families, their partners, and doctors. Although disclosure is not always necessary, people like Linda Booi and Alistair Martin feel that it is important for personal reasons. Others, like the woman in the last story, face circumstances where disclosing is necessary in order to prevent the spread of HIV.

Having the courage to disclose one’s status can have a positive affect on others considering disclosure. Members at the Boston Living Center who disclose their HIV status can attain the rewarding position of being a peer leader to help others with the disclosure process.

For those who are considering disclosing their HIV status it is important to know that even if family, friends, and partners are not supportive, there are other people who will listen and help. For example, the Boston Living Center has many support groups as well as counseling services. One program offered at the BLC is Healthy Relationships.

Healthy Relationships helps members cope with disclosure of their HIV status and build safer sexual relationships. One portion of this program is the use of role-playing to test out different disclosure situations. This program does not force members to disclose their status, but instead teaches skills to reduce the stress of disclosure. For more information check out the BLC website.

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