First, Cara and I tried to go to the pre-conference on Friday the 8th (my birthday) but hung around in an empty Convention Center until someone told us that the conference had moved to a local hotel. After wasting so much time, we decided to enjoy the day at the Santa Monica Pier. Once we finally got started with the conference the next day, the HIV information that we came to get began to flow. The most interesting and remarkable sessions I attended included the sessions on Advocacy, Incarcerated Women and Transgender Issues.
Let me start with Advocacy. First, Julie Davids rocks. She is associated with ACT UP Philadelphia and was able to give us very clear information for the "baby" advocate. I have never really had someone define what an advocate is or what activism means. Julie shared that an advocate is one who "pleads the cause of another; one who defends some special cause." Activism mobilizes people to act as a united group to increase their power to affect change. Activism increases our power to raise the social cost of bad policy.
So what does that mean? When we fought to include female-specific illness under the CDC AIDS diagnosis, that was a form of advocacy. It was the battle to "give" women AIDS. Remember the saying, "Women Don't Get AIDS They Just Die From It"? That was an initiative that changed the way we medically treat HIV-positive women. It also changed the services that HIV-positive women could qualify for (e.g., Social Security). Remember, some services are based on your diagnosis: HIV or AIDS? Julie reminded us that nothing has ever been given to people with HIV, everything was fought for and won! That is as true today as it was back in the early 1980s. Locally, we are still fighting for ADAP funds, the HIV medication rights of inmates, and affordable medication co-pays at Grady Health System.
What can an advocate do? 1) Write a letter, 2) join an advocacy group (call AIDS Survival Project to join our Advocacy committee), 3) meet with your legislators to express your thoughts and concerns, or 4) write the newspaper, encourage an article on an issue that is of concern to you -- send out a press release, press kit or press call. I think that people only see advocates as these radical people who tie themselves to a building or yell through a bull horn. If you write a letter or make a phone call to a legislator, you are an advocate.
And if you do so... congratulations! You are encouraging change for the better. You are making improvements in the world. And, as Anne Frank said, "How wonderful it is that nobody need wait a single minute to improve the world." I agree, it is wonderful, and if you are interested in starting your advocacy efforts now, AIDS Watch 2000 is at the end of March. To become involved in this advocacy effort you may call 202-898-0414, or e-mail www.napwa.org.
As many of you know, many of our incarcerated folks in Georgia are not receiving their HIV medications. I attended Dr. Timothy Flanigan's session on Incarcerated Women in hopes of finding ways to work with the criminal justice system. Dr. Flanigan is a physician with the Miriam Hospital in Providence, Rhode Island, who with a team of medical professionals, provides HIV care one time a week at the local prison in his area. During a question and answer session, I asked Dr. Flanigan what he thought we could do in Georgia to work with the jail/prison system. He suggested that we offer an educational dinner for the employees of the jail/prison system so that we could begin to establish a friendly rapport. Dr. Flanigan shared that jail/prison employees rarely have any type of banquets or dinners sponsored for them. He suggested contacting pharmaceutical companies for sponsorship. After the session, I realized that this does not need to be a problem. Incarcerated folks can get their HIV meds, care can be provided, law suits do not have to be filed, and the system can change. It happened in Rhode Island, surely it can happen in Georgia. So, if any pharmacy reps want to help out in this endeavor, give us a call at AIDS Survival Project.
And for the California finale, lets talk about the information that was presented on Transgendered Issues. The first part of the presentation was on behavioral research that was conducted by Dr. Deanna L. Sykes, with the California State Office of AIDS. She decided to do a study with people who are transgendered because of the elevated HIV risk and the invisibility of this population. The "typical" respondent was about 32 years old, identified as a female, or both, is on hormone therapy and has not had genital surgery.
During her interviews, participants disclosed that their partners were more likely to engage in high risk behaviors and that the preferred sex role is receptive. Another risk for HIV is sex for pay. Sometimes, this is the only way that a person has been able to earn money because traditional job environments do not often welcome the applicant who is transgendered. She also mentioned that as these persons begin their transition from male to female, the may choose to begin hormone or silicone injections. Due to the lack of access to prescription needles, they may share needles in order to administer these products, although her study indicated that this behavior was minimal. The primary risk for HIV seemed to come from sex for pay, high risk partners and multiple partners.
Dr. Sykes provided a chart that defined common identification terms but mentioned that the chart may not accurately reflect the meaning of personal identity labels. A second speaker also spoke to the issues of labeling and shared that it is often offensive to call a person who is transgendered "gay." The session reminded me that this community is hard to reach, and that in many ways our language and attitudes may contribute to the barriers which keep each of us from joining together in the fight against AIDS. For additional information on this study, you may contact Dr. Sykes at Dsykes@dhas.ca.gov. For Transgender Resources and Information, contact http://www.symposion.com/ijt/index.htm for The International Journal of Transgenderism; http://www.transgender.org for the Transgender Forum's Community Center; and http://www.lava.net/~dewilson/gender/resources.html for Transgender Resources.
I attended the one day Maternal/Pediatric HIV conference with my peer Nancy. There is no way I will be able to cover all the topics so I will reduce the information down to the following: The Impact of HIV on the Family, Children's Grief and Loss Issues, and a tiny bit on HIV Testing & Confidentiality.
The speaker on the first topic was Anna Garcia. I was very impressed with her. Of course, I am a little biased since we share the same profession of social work. She shared that in the United States, there are 8,461 reported pediatric AIDS cases. Florida ranks the second highest in Pediatric AIDS cases with a total of 1,330. As we look at how we care for children, treatment adherence and compliance is a big topic of interest for clinicians. Anna shared that we generally see poor compliance, multiple system obstacles (i.e., managed care), family illness, denial of diagnosis, and a weak faith in medications. The factors that may be affecting treatment adherence and compliance might include: the complexity of the regimen, the duration and amount of change imposed by the regimen, inconveniences of clinics, patient dissatisfaction, health beliefs and no promise of a cure.
What can we do to help? At the Grady Clinic, the team will often refer clients to the Visiting Nurse Health System to assist with medicine compliance. A registered nurse is available to go into the home and help create a pill schedule that is workable for the family and child. Support groups are offered so that kids who are aware of their diagnosis have a place to talk about their feelings. Anna suggested other interventions to get the patient more involved in their care. She suggested a "Youth Leader" program for teenage peer counselors or a drop-in center for HIV-positive kids.
I later attended the Children's Grief and Loss Issues session which shed some light on working with the child who is dying. The speaker reminded us that a dying child is much more aware of their illness and prognosis than we usually think. And because of this, the child should be involved (if able) in some discussion of the overall management. When a child asks, "Am I going to die?," be honest and confirm it. Stay with the child for what comes next. Other responses may be: "What makes you ask me that right now?" "Are you feeling worse?" "Are you unsure about how things will turn out?" For infants too young to have a concept of death, maximum comfort may be the goal. For the child 2 to 7, attend to separations issues. For the child 7 to 12, focus on the fears of abandonment, destruction and body mutilation. Adolescents present perhaps the greatest challenge. Issues are self-esteem and body image, privacy, independence and anger. Most important, preserve hope at all stages of illness. The HIV-positive child has so many issues that I walked away feeling very overwhelmed. When I got back to Atlanta, I asked our Treatment Specialist about the possibility of including a Pediatric HIV Forum to the 2000 schedule. Without hesitation, Dan agreed. So, keep an eye out for it.
For Florida, the words "HIV Testing & Confidentiality" should probably not be in the same line, because Florida is currently under a name-based tracking system. It was not so long ago that Florida had a "situation" where persons with HIV had their names exposed to the public. I attended this session because I fear that Georgia may one day go to this type of system. This is all I will say about this because I think we are all aware of the "bad" things that can happen if Georgia goes to names reporting. Until the world embraces people with HIV with unconditional love and fairness, we must continue to put systems in place that will never allow persons to be identified without their permission.