HIV Treatment Education in 2002
Ten years ago, I left the bright lights and the big city of Los Angeles and settled in Iron Mountain, Michigan. Iron Mountain is in the Upper Peninsula (U.P.) of the state, and is very rural. The state of Michigan is comprised of two peninsulas, upper and lower. The U.P. is surrounded by Lake Superior to the north, Lake Michigan to the south, and Lake Huron to the east, and it's bordered by the state of Wisconsin to the west. The two peninsulas are connected by the Mackinac Bridge, with one interstate that runs north and south and two highways that run east and west, neither of which are four-lane freeways. Although Michigan has a population of roughly nine million, the U.P., which comprises a third of the state's total landmass, has only 300,000 residents. Weather may be a factor in this equation, since residents here endure five or more months of winter every year.
Having worked with and cared for many people with AIDS over the years, I planned to continue my work as a prevention and treatment educator in my new home. To my dismay and surprise there were no services available in the Tri County area -- no support groups, no doctors that actually had HIV-positive people as patients, no prevention efforts or treatment education. The attitude in this rural community was that AIDS was a big city problem.
Knowing that there were people in the community who were HIV-positive and living with AIDS, I started a support group, recorded public service announcements, and developed prevention and treatment presentations.
The support group was one of the first challenges. Fearful of confidentiality issues, we had to meet in various locations. Getting people to the table was something that made little sense to the people of the support group -- why would you, a total stranger, care about us? Each individual viewed him or herself as "the only one" because no one talked about these issues. People suffered in silence, not even wanting to admit their diagnosis to themselves, let alone family or friends for fear of becoming a total outcast, or fearing that their families would be outcasts if word reached the community that their son, daughter, brother, uncle -- whoever -- was positive.
Through the years, the support group has looked into many different areas of treatment, engaging in long conversations about available medications and alternative therapies, such as herbology, nutrition, vitamins, massage therapy, acupuncture and mental healing (crystals). People were grasping for anything that might work. I encourage them to find out about different therapies and ask questions of each other, myself, and, more importantly, their doctors. Be informed, ask questions, keep up the fight and do not give up in the face of adversity.
Community presentations posed another obstacle. People in the support group did not go to local physicians. They traveled to the major cities for care and treatment, with the closest city an hour and a half away. They even refused to have their prescriptions filled at our local pharmacies, in case the pharmacist recognized the drug and its purpose.
Meetings with local physicians resulted in a lot of negative feedback. I wanted to talk with them about the new treatments that were becoming available. One physician said, "I know nothing about the virus and its treatments and I do not want to know. I -- and I think I speak for all concerned in this room -- have to worry about our livelihoods. We could lose our patients if word got out that we were seeing this population."
Though it could have been a total disaster, I managed to meet with a few doctors who did come forward and at least agreed to be the general practitioners for people in our group. I meet with them occasionally to share treatment information.
Bringing the Names AIDS Project Memorial Quilt to our area was an accomplishment that, in my opinion, opened the eyes of our community. Through continuous community education presentations and radio spots, a group of community members was formed to bring the AIDS quilt to the U.P. Two years of hard work reaped many rewards. Though we still had many obstacles to overcome -- getting funding to bring the quilt to the community, finding a location large enough to display the panels, not to mention threats -- the community came forward and learned about the disease. Some even talked for the first time about family members, friends, or acquaintances who were infected or affected by HIV.
Now people are asking questions about different treatments, the effectiveness of certain therapies, the pros and cons of one drug compared to another, and different drug studies.
It has been a long journey to meet the needs of the community in regards to prevention and treatment issues. Coming from Los Angeles, where the subject of AIDS was very open and talked about, to one where HIV/AIDS 101 never existed was and continues to be a difficult but welcome challenge.
Philip Gardiepy-Hefner is an HIV/AIDS Service Coordinator, Superior AIDS Prevention Project, Upper Peninsula, Michigan.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.