Note: All names of individuals and programs have been changed and identifying details have been altered.
Inland Tri-County Agency
The woman who led me into the group room said, "There aren't going to be many people here today" and then left. There were four people, two of whom had chronic HBV, and they had lots of questions. I know I'm needed when people ask which hepatitis virus is airborne. I offered to meet with each of the participants individually after the group and one agreed. It was a major hassle to get a private room there -- first they led me into a case management den, which was a series of cubicles with other people working nearby. I insisted on getting space with some privacy. I'm glad I went up there, and feel like I could continue to do some good work, but they are making it an ordeal.
In the Office
My Monday staff training group was more engaged this time and I thought it was pretty exciting because I had a chance to address lots of questions that indicated misinformation -- people tended to attribute ART resistance solely to poor adherence rather than considering serial monotherapy, improper dosing/absorption, etc. I mentioned that certain side effects may or may not be directly caused by the drugs, HIV itself, or another underlying or developing condition. Participants were extremely interested in the Guidelines. I promised to bring copies to the next workshop. We discussed the pros and cons of starting "early" or "later" and of taking STIs/drug holidays in a real-world sense (i.e., asking clients what they are doing in terms of monitoring their VL/CD4 cell counts).
Went upstairs to do two intakes. Both people were excited and happy to have a chance to sit down with someone who had time to speak with them. The first client is someone it will be great to work with -- he is invested in getting good care, asking questions and learning as much as possible. The second client has a lot of issues (with anger and stress management, recovery from 13 years of heroin addiction) and really needs whatever support and information he can get as his health care appears to be very sketchy.
Women's Drop In
The workshop went very well, although I didn't stay strictly on topic -- the women had questions about the relative risk of oral sex. (This was introduced initially by some questions about re-infection when two positive people have unprotected sex -- and could a person make "antibodies to protease inhibitors from someone's semen who is taking them?") Anyway, the group was aware that we'd strayed and it was easy to get back on topic. One woman said that it was really, really helpful -- she had never understood what her HIV meds were doing -- having an understanding made her feel much more invested in adherence. There were a lot of comments about the various side effects people had experienced with different medications, and resistance came up a lot. I covered a little bit of that and said I'd be happy to come back and do another workshop just on resistance.
There was one person who had a pretty detailed question about stopping HIV medication. She was told by her doctor that no one should ever stop taking their medications because the virus could get too strong for the medication to kill -- but she knew people who had stopped taking them. So what was happening, who was right, why would someone stop taking meds, did everyone need to stay on them? I encouraged her to stay and talk if she could but she said that she had another appointment and that she would try to come back next Tuesday.
This staff training went well -- people were really interested and asked lots of questions, including things like "How can we work with medical providers?" and "How can we educate clients?" and "Does Medicaid pay for peg-interferon?" Of course, it wouldn't be a workshop without some characters, like the staff member who kept nodding out.
Although the person who had arranged the group wasn't there, things went pretty smoothly until 20 minutes before it ended, when a supervisor interrupted us and suggested we quit so they would have time to clean up. The group told her that we still had 20 minutes left, and they remained invested for the whole time. This was especially amazing because the group ended at 7:30 p.m. A couple of the participants had additional questions that we answered individually after the group was over. We encouraged people to contact us directly anytime they had a question.
Wednesday -- Rain
Decent but not fabulous workshop at Long Station Cares. Got lost in the rain and arrived soaked. The directions were completely misleading. There were a couple of talkers who sure had a lot to say! Most of it was very interesting, although not pertinent to the topic of the workshop, which was resistance and cross-resistance. I fielded questions about sperm washing, why teenagers have such a high rate of HIV infection, why some people who are long-term drug users seem to live a lot longer than those who take ART and take good care of themselves (one person said, "just because someone gets clean doesn't mean that they have not already really damaged their body").
I was confronted by the director who expected me to offer bus passes to people who showed up 25 minutes late. I gave out the bus passes and nicely explained (again) what our policy is about paying for transportation.
There was a delay with lunch and the next group started 25 minutes late. Almost everyone was engaged in the workshop -- "HIV Meds and How they Work." People had a lot of comments about side effects and depression. One woman said that her HIV meds make her feel tired all of the time. I responded by letting the group know:
- There may be another reason why a person is not feeling well, and talking to a doctor to figure out what is causing symptoms/side effects is a good idea.
- There may be other options for a person's ART selection.
- It's important to look at and treat the whole person.
The group really liked this last point. Two members shared their experiences with stress and depression and said that coming to the group had been a huge help and that they had gained weight and felt less tired after participating.
I've scheduled two more workshops there. There was, of course, a bus pass squabble. I outlined our policy to the Director clearly so that participants would be aware that they must attend the entire workshop to get the passes, but of course, one person was pretty indignant. I hate this -- it feels really gross to squabble with someone over $4.00 -- especially when it's pouring outside.
Today I did two workshops at Southside Drop-In. The first one, a staff training on HCV, went well. The staff was very engaged, and had really good questions and comments. One person stated that it was impossible for homeless people to take HAART. So I asked the group to suggest some possible interventions and the best they came up with was to "get housing for the person." So I said, "what about a regimen with fewer pills -- what about finding out where they could get meals? These may be easier and quicker to achieve than finding housing, which of course is also very important." They did not have any solutions for active users -- I suggested asking the person about their patterns of using to see if they could incorporate their HIV medications into these patterns. All in all, I was happy about how it went.
The workshop for the peer educators at Southside was great! Somehow, it seemed to arrive at the perfect balance of content and process and the group was really engaged. The topic was HIV pathogenesis and while discussing transmission, we really got to explore how harm reduction could be integrated into the delivery of prevention services. It got really exciting when I said that next week we'd talk about how the drugs work. One participant said, "I've never asked how the drugs work -- I've only asked about side effects." I said, "once you get an idea of how they work, the side effects certainly won't become less of a problem, but having more information about the other things drugs are doing can be helpful." Anyway, his eyes lit up. He said he'd never thought about it that way and that he really wanted that information -- and the rest of the group was really excited about learning more and said they can't wait for me to come back. They also asked if the group could go more than one-and-a-half hours, so I suggested 2 hours with a 10 minute break next week.
I went to the graduation at the LifeGoals Program -- an incredibly moving experience. I would have been crying anyway, but finding out that the program was de-funded and hearing the graduates speak, many of them saying that this was the first time they had ever been able to complete anything and having gotten to know them and watch them open up, become less angry, more trusting and open, really made it all the more emotional. The thought and hard work that's gone into the LifeGoals program is amazing -- and it was so wonderful to go somewhere where people actually care so much about the work they are doing and the people they provide services to. It is very disturbing that this wonderful program is coming to an end.
This morning's workshop at River Group went well. I thought I did a decent but not a fabulous job. Things like "Do they still call it full-blown AIDS" and "ARC" came up, as did transmission stuff around oral sex and a lot of valid but difficult questions -- i.e. "I have several clients who are mentally ill. They really need to be on HIV meds but they take them for a few days and stop because of side effects. Then the whole cycle starts up again a month later when they go back to their medical provider. What can we do about this?"
I'm going to go back and go over how antiretrovirals work again. Towards the end of the workshop, one of the staff said "If you already have AIDS, why bother to take these drugs -- it's too late for them to do any good, isn't it?" -- a big red flag about addressing educational gaps. I addressed this in the few minutes that I had left, as did one of the peers, but I don't feel it was adequate. It's difficult, because when I have a group of peers who have life experience to share, the last thing I want to do is create the impression that my information is more valid than their life experiences. The only unpleasant thing that happened was a fight over a bus pass with a latecomer.
Another challenging workshop at Challenge House. A client who later did a one-on-one with me was disruptive, and people kept joining the group and asking questions about themselves, so I had to stress again and again that I was happy to stay and do individual meetings after the workshop. It was extremely hard to stay focused on the topic. I'm not sure what all the situations are with people who go to this group are as far as mental health and active drug use go, but again, it was pretty challenging.
The things that really went over well with the groups were:
- Mentioning that everyone's immune system is different, and although there's lots of information about HIV, not all of it may be as applicable to one individual as another.
- Acknowledging that although we were going to be discussing medical information, there's so much more to a person than his or her medical issues.
Then, just as we were about to break, one of the peer educators loudly stated that neuropathy is just like arthritis and that you just have to tough it out. I was stunned, but then I got the signal to end the workshop so I didn't have time to really address this problem. I wish I'd handled it better.