John Maddy (not his real name), a thirty-year-old HIV-positive patient, is taking anti-retrovirals, a group of medications used to treat HIV/AIDS. “Any time I go to the HIV/AIDS clinic, I go home with three anti-retrovirals,” he says. “I have seen a lot of improvements in my health. My family even thinks I may not have gotten HIV after all.” But at the clinic, Mr Maddy always leaves behind labels and medicine information leaflets of the anti-retrovirals he is taking. Mr Maddy is one of more than 13,000 HIV-positive patients currently taking anti-retrovirals in Ghana, who abandon anti-retroviral information leaflets and medicine labels. Blame stigma associated with HIV/AIDS for their actions. “I don’t want people to know I am HIV-positive,” Mr Maddy explains. Being Loud about HIV? HIV/AIDS first surfaced in Ghana in 1986. The initial association of HIV/AIDS with prostitutes has contributed to HIV-positive patients being stigmatized. Since prostitution is a taboo in Ghana, even family members of victims suffer. Therefore, Ghanaian men and women living with HIV use secrecy as a plan to cope with their illness, to shield their families from being stigmatized, and to maximize the care and support from their families. A strategy had to be adopted to eliminate the stigma. In 2003, the Ghana Ministries of Information and Health, the Ghana Social Marketing Foundation, and the Johns Hopkins Bloomberg School of Public Health Center for Communication Programs (CCP), with support from the U.S. Agency for International Development, launched the “Reach Out, Show Compassion” multimedia communication campaign. The campaign features many religious leaders who are encouraging the public to show compassion and reach out to people living with HIV/AIDS (PLWHAs). The announcement from the campaign continues to be aired on the airwaves. But stigma is far from being removed. In May 2007, Mrs Theresa Kufuor, the former First Lady, urged PLWHAs to help raise awareness of the disease by speaking out about their condition and using it to help and educate others at risk. However, the former First Lady was also aware of the stigma: “When stigma stops, people will open up about their condition and seek help,” she said. HIV: When Silence is Golden? “The best way of fighting stigma is not to let anyone know you are HIV positive,” says Mr Raymond Tetteh, clinical pharmacist in charge of treating HIV-positive patients at the Korle Bu Teaching Hospital. “After all, people who have diabetes, high blood pressure, and other chronic diseases do not go around telling people they have those diseases. Why HIV/AIDS?” But it appears HIV patients are treated differently than other patients. For instance, at the Korle Bu Teaching Hospital, counselors ensure that each HIV-positive patient is accompanied by a monitor before treatment begins. This is not so for other diseases. “Monitors could be trusted relatives or friends, and their role, among other things, is to encourage and support the patient emotionally, financially and ensure strict adherence to therapy,” says Mr Tetteh. “They also encourage patients to keep appointments with the care team.” The presence of monitors is not the only difference in treatment between HIV-positive patients and other patients. Counselors, upon requests from HIV-positive patients, replace original anti-retroviral medicine containers with non-antiretroviral medicine containers. Other patients bring their own containers to the clinic. Patients hate to see medicine information leaflets. Thus, counselors have no option than to give only oral information to patients and their monitors. At Komfo Anokye Teaching hospital, HIV-positive patients dump anti-retroviral medicine containers at the pharmacy. “They will prefer to do nothing with the original containers, let alone the leaflets accompanying them,” says Mr Ralph Obeng, a senior pharmacist in charge of the pharmacy where HIV-positive patients receive counseling and medicines. “Because most of our patients live in compound houses, other people may suspect the patients have HIV upon seeing the original containers and the leaflets,” explains Mr Obeng. Samuel Yawson, a clinical psychologist who had his internship at the University of Ghana hospital, supports the attitude of HIV-positive patients on leaflets. “Once colleagues get to know a patient is HIV-positive, they will withdraw from the patient,” says Mr Yawson. “This may cause depression in the patient, weakening the patient’s immune system, and killing the patient fast.” Why information leaflets? More than indicating names of medicines and diseases they treat, medicine information leaflets present vital information such as the correct dose (amount) of medicine to take, side effects of medicines and the precautions to be taken to mitigate them. The potential interactions of medicines with diseases, other medicines, food, and drinks may also be shown on medicine information leaflets. Medicine information leaflets have long been used to complement verbal counseling. A study published in the American Journal of Public Health in 1979 indicated that written information frequently improves patient knowledge of precautions, side effects, or special directions associated with medicines. Patients taking multiple medicines, like HIV-positive patients, especially need information leaflets more than any other. In a study published in the journal Health Education Research in 2007, researchers from South Africa linked medicine information leaflets to proper medicine-taking behavior of HIV-positive patients. “Appropriately designed written material can have a positive impact in improving adherence and, together with verbal consultation, are essential for enabling patients to make appropriate decisions about their medicine taking,” write the authors. In 2008, the Food and Drugs Board (FDB) required all drug companies to include medicine information leaflets in medicine packages. The FDB’s directive poses additional cost to drug companies. “It is costly to print medicine information leaflets in Ghana,” says Mr William Adjabui, a pharmacist in charge of product design and research at DanAdams Pharmaceuticals Ltd, the only drug company that manufactures anti-retrovirals in Ghana. “We are sometimes forced to print leaflets abroad.” Mr Adjabui welcomes the idea of PLWHAs refusing to use the medicine information leaflets. “It will be an economic incentive for us if we stop producing leaflets rejected by consumers,” he says. The way Forward? “The way forward is for us to produce consumer information booklet for different diseases, instead of drug companies producing information leaflets for individual anti-retrovirals,” says Ms Angela Ackon, a drug information pharmacist and formulary manager at the National Drug Information Resource Centre. “Almost everyone takes medicines, so nobody will assume a patient reading a booklet containing information on anti-retrovirals and other medicines is HIV-positive. Mr Maddy agrees with Ms Ackon. “I will obviously like to read a book containing information on different medicines for different diseases, including AIDS,” he says. “Not leaflets.” If you see a picture of an HIV-positive patient holding a bottle labeled as an anti-retroviral, and an anti-retroviral medicine information leaflet, the picture probably was not taken in Ghana. There is stigma in a bottle, but there is hope in a consumer medicine information book that has information on medicines, including anti-retrovirals. Credit: Bernard Appiah [bernappiah@yahoo.com] The author is a graduate student in science and technology journalism at Texas A&M University.