|What do you do for someone discouraged by healthcare?
Jun 20, 2009
Back in the '80s, my partner of now 25 years, and I would drive to New York & Philadelphia every weekend to care for our friends dying of AIDS. We cleaned their apartments, fixed their meals, did their laundry, often spent our own money to buy groceries, took drug abusers to rehab in Washington, DC where we lived, and helped reuinte them with their families. They were our family. Eventually, we bought a house where we raised my niece and nephew. After 9/11, we decided to move to California where some of our friends had already moved and when my partner tested positive it was a great shock to me because I just couldn't imagine ever having to live through that painful period again. It inevitable that I would test positive as well and when I did, I began living each day as my first by becoming active in the HIV Planning Councils, the AACTG, doing independent research, and taking classes in nursing while my partner lived every day as though it were his last such as working in a sex club, and throwing caution to the wind. Living in the Bay Area was expensive so we moved to Palm Springs where healthcare for PLWHAs is rather grim amd the Desert AIDS Project (DAP) is a beautiful facility filled with staff members who are driven by county priorities to discourage clients from using their services. There have been many problems with the medical end such that many PLWHAs drive 100+ miles down the road to LA or San Diego to get better medical care. I was doing that for awhile and after a year of that, someone recommended a new physician who had moved to the area. But the problem was getting ADAP and for two years I was told that I had ADAP when I actually didn't because my case manager lied when she said she was taking care of it. The physician I was seeing kept me on meds prescribed by my doctor in LA and another physician would sit and take notes about what I gleened from the web. My partner was seeing a physician who claimed to be an HIV/AIDS authority even though he didn't even specialize in Infectious Diseases. He kept my partner off of meds telling him the side effects were worse. Last September I was thrown out of the DAP for "missed appointments" even though I had been there for everyone but they kept rescheduling me because I was a new patients and was not given correct appointments. They reminded me that I had tried to engage the media about their denial of Ryan White Services, and so, my partner and I put our belongings in storage and went north where they immediately put my partner on meds and prescribed different meds for me. My partner and I signed up for ADAP and tried to find housing and employment but it was discouraging, and with a limited budget, we returned. I became active at Eisenhower MC which has some of the most incredible physicians, and a staff that is so accommodating, but they are limited in what they provide for HIV/AIDS. I underwent surgery for my hernia that the DAP tried to tell me I didn't need, but there has been one big problem. My partner no longer has insurance due to lack of employment and no physician will consider a patient with Medi-CAL (Medicaid); my partner had to stop meds because he can't get ADAP and the only way that I've been able to keep up my meds is by calling up north and having them put through my paperwork. They won't do this for my partner because they are trying to make the process work through the county. It's absolutely deplorable. People in this county have a backwards view of gay people and AIDS. There is very little synergy only among those who have money. There are no job opportunities and while it's a great place to come for a vacation, the daily life here is so limited. Now, my partner has gone for many months without meds. He's done everything possible but they have him going through hoops. It's disgusting. There are others here who have had to stop taking meds because they have no ADAP or means to pay for them. Many have ended up in the hospital (the Desert Regional MC) where they are often treated as drug abusers even though they are not. Meanwhile, there are only 4 people that attend the DAP substance abuse program where my case manager sent me because she thought it would be a way of breaking the ice, but when they asked me what drug I abuse and I told them cigarettes and sugar, they threw me out thinking I was sarcastic, but honestly those are the drugs that I abuse! My partner now sleeps every day and night. I can't get him to move out of bed. He is always ill and when I offer to take him to the ED, he won't go because he feels that he's just a burden. I know he's right. I've been praying for a miracle and that came from a doctor in the ED at Eisenhower who convinced me that no matter what, I had to leave this area. I'm planning to so that but what can I do to get my partner to get out of bed without being thrown across the room? Do I have to call the paramedics to take him into a hospital? Should I just have a few friends tie him up and then stick him in the car until I get to the clinic in San Diego and then let them take care of him? I don't think I've ever felt this helpless. It reminds me of those friends we knew back in the 1980s... If we can't help the people in this country get AIDS meds, what purpose does it serve us to help other nations? After all, when you're on an airplane and the oxygen masks drop, there's a very good reason why you need to put a mask on yourself first before putting it on your child. Thank you for your response. You have no idea how much it is appreciated!
Response from Dr. Frascino
I'm not sure how I can help you or your partner over the Internet. It certainly sounds like you've had a difficult time navigating the health care system and that is unfortunately all too common due to our current broken health care system. Hopefully Obama will help fix many of these problems. However, case managers who lie? Being thrown out of the DAP for "missed appointments" you didn't miss? Being thrown out of the substance abuse programs? Claims of poor HIV/AIDS care in Palm Springs? Certainly there must be two sides to your difficulties in dealing with the healthcare system. If you need a good HIV specialist in Palm Springs, try John Stansell, M.D. He's well qualified to handle your needs.
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