I am 28. White. A Female. And a former Peace Corps Volunteer. I am HIV Positive. This is my story of how a few months, a few people, and a few events in Zambia changed me and my life forever. This is the story of how I contracted HIV and brought my Peace Corps Journey to a crashing halt... and how I am working now to pick up and put back together the pieces of my life as a newly diagnosed person living with HIV. This was not the journey I had originally planned... my path has traumatically and dramatically changed... but it is the one I am on now. There is no going back. There is only forward. I welcome you to follow along with me as I attempt to explore this new life ahead of me, whether you are someone from the Peace Corps community, or someone living with HIV. I welcome your comments, questions, suggestions, and opinions. Let us go forward together. To start from the beginning, click here He Gave Me More Than A Bracelet.

Sunday, February 26, 2012

Is PC Taking Care of You?

A couple of things have inspired this blog post. One being Director Williams’ question, “Is PC taking care of you?” (During my speaking event, a future volunteer also asked a similar question.) Another being a fellow Medevac’s blog I was just reading, discussing some RPCVs/Medevacs having issues with Peace Corps. So… I figured I might expand a little bit on what I think of Peace Corps and their treatment of me so far… hope not to offend anyone too much…

PCMOs Zambia: When I first fell sick, I felt that the PCMOs were attentive in checking up on me. They also acquired transportation to bring me into the capital. However, once in the capital, I felt continually frustrated as I felt they were “underestimating” how sick I really was. It seemed they were making random guesses about my illness, and kept “waiting it out” rather than doing more. They kept telling me to eat and drink Oral Rehydration Solutions, and not taking me seriously when I said “I absolutely cannot eat”. I remember laying in the bunk bed literally thinking I was going to die and they were not going to do anything about it. At the time I even posted on Facebook, “I just wish they would put me in the hospital and hook me up to IVs”. FINALLY when I got to the point of throwing up constantly and developing a rash all over my body, the PCMOs sent me to the hospital.

Zambia Hospital: I finally felt taken care of. I felt the doctors were a bit more knowledgeable, and they were actually getting test results and talking with me. The PCMOs came in and out, but were overall not that helpful. I listened to them “argue” with the hospital doctor about flying me to South Africa. The hospital doctor wanted me on a private medevac flight. Peace Corps just wanted to put me on a regular commercial flight. Finally, I flew out, on a regular commercial flight, with one of my PCMOs accompanying me.

South Africa Hospital and PCMOs: The Regional Medevac Center and PCMOs in South Africa were wonderful. They were knowledgeable, patient, kind, and attentive. My care was mostly under hospital doctors/staff, but the PCMOs came each day to check on me and talk with me. I had no working phone, so they also allowed me to use their personal phones to call my mother in America. They helped me work through my diagnosis, and patiently discussed options for returning home to the U.S. They were in communication with DC and updated me on the plans. They made sure I had comfortable living arrangements until I flew out.

*** Note: I don’t know where/when this issue falls in the timeline… but someone somewhere (PCMO Zambia, DC Headquarters, or PCMO South Africa) chose not to tell me about my first positive HIV test result right away. They withheld the information, and I was “accidentally” told by the South Africa Hospital doctor instead. This little blip has continued to bother me…

Flight to PC Headquarters DC: I was a little off put that no one picked me up from the airport, as I was still pretty sick and weak. I was simply given an address of a hotel and told to make my way there.

International Health Coordinator: This person was extremely helpful, assisting me in every sort of issue- appointments, phone calls, insurance, etc. She has continued to be helpful even after Medical Separation, and still serves as a contact point for me within Peace Corps. I feel she genuinely cares about me and my case, and will continue to help me in any way I need.

PC Counselor in DC: My counselor was absolutely amazing! That’s all I can say!

Doctors in DC: They were very knowledgeable and up to date on research regarding HIV. I received extremely good medical care while there.

FECA (Federal Employee Compensation Act): Peace Corps Staff assisted me in writing and filing my claim for Federal Workers Compensation. I am lucky they did most of the work in filing the claim. My claim was accepted and approved very quickly, and I will have it to cover my HIV related medical care for the rest of my life. However, now that I am in the real world and attempting to use it, I have been running into constant issues. Doctors offices, pharmacies, etc. are not familiar with using this type of claim or forms, and are finding it to be difficult. I feel that it has and will be a continuous struggle and learning process.

Close of Service Process: There was a huge disconnect of information between DC Headquarters and PC Zambia. No one really took charge and told me what I needed to do to finish everything up and get closed out. I was passed around to different contact persons. I attempted to communicate with my APCD in Zambia on my own to take care of most issues. She did her best. It has been 5 months, and I still don’t have my belongings back from Zambia (though I think they might finally be on the way). PC Zambia has continued to give me no response about my money in my bank account in Zambia. As far as I know, my Description of Service Statement was never signed and returned to me or to Headquarters.

So, I hope that gives a little more information about my variety of experiences with Peace Corps staff during and after my illness. I can pretty much make the simple and quick generalization that Headquarters in DC and PC South Africa have been very helpful, whereas PC Zambia continues to be not so helpful.

So, as I answered Director Williams, “They are trying.”

12 comments:

  1. Hello, I am a PCV currently serving in The Gambia. I am not sure what it is like in other African countries, but in The Gambia it is difficult to get a regular supply of condoms. As recently as last month I requested a month's supply of condoms from the health unit here, they were able to supply me with four, not four months... four condoms! So either the message here is don't have sex or good luck buying your own condoms on a Peace Corps allowance. There are obviously many things that could be improved regarding our medical care. Thank you for creating a place to discuss these issues. Wishing you the very best in life, please be in touch if you like, I am here... http://2010tice.blogspot.com/
    Thanks, Matthew

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    1. Wow. That's so odd. In Costa Rica (I realize that's not even close to the same part of the world, but you would think some things would be universal), there was an endless supply of condoms, including a basket in the volunteer bathroom that you could take from anonymously if you preferred.

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  2. I have nothing but respect for you for writing this blog and using your experience to educate people across the world. I am sorry to hear that this has happen to you and in no way judge you or your actions. However, I feel it is absolutely ridiculous that Peace Corps is paying your medical bills. Your status of HIV did not happen due to the description of service the PC assigned to you. You chose to put yourself in the situation in which you contracted HIV. Again I do not judge you for these actions, and yes it can happen to anyone. Also, I do not feel it was PC's responsible to educate you on safe sex. Nor the responsibility of any employer, ever. I am glad your blog is here to help the education spread and if the training PC gives changes due to your experience that is great. However, at the end of the day only the individual person can make their decision to practice safe sex. What could PC of really said to make you use a condom during oral sex? Oral sex is still a low risk activity...you are just the unlucky few who contracted HIV through this method. You knew HIV could be transmitted through oral sex but you made the decision most would, to not use a condom. What other job in the world would cover this incident under workers comp. I feel you should be very grateful for this insurance coverage rather than complain about difficulties with your insurance card. Many Americans have difficulty with unfamiliar insurance cards/claims that their work provides benefits or pay out of pocket the monthly insurance cost. Not to mention the millions of Americans who can not afford to have the "luxury" of insurance(myself included). I just ask you take a moment to count your blessings of the PC deciding to pay your medical bills. I can not agree with this decision because workers comp is a work injury and you were "off the clock". As a RPCV, I have nothing but respect for you, admire your courage, and jugde you in no way. I am sorry if I offend you in any way, but I thought this perspective might give you something to be thankful for. The PC provides better health care than any insurance company I have ever dealt with, and as a former pharmacy technician, I have dealt with many! NO other insurance company provides transportation.

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    1. I can see your point, but from what perspective do you ask her to "count her blessings"? Does she really need that sort of anonymous, condescending advice? And just to mention as the other commenter pointed out below, it is not Peace Corps but FECA that processes claims after service, so she is like any federal employee under FECA. Maybe FECA is tougher to navigate than other HMO's!

      And I disagree that it should not be Peace Corps' responsibility to educate volunteers about safe sex, especially in countries with higher HIV incidence.

      Everyone comes to Peace Corps with different backgrounds and a standard part of the PST curriculum in my post is how to avoid common illnesses, injuries, and depression. Why wouldn't they teach us how not to contract STDs?

      Does it imply Peace Corps is responsible if volunteers fail to practice what they're taught? No, of course not. But the point to me is not who's legally responsible - the point is improving risk communication so that there are fewer cases of HIV contracted from oral sex.

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    2. Low RISK , High RISK. There is a RISK. I think I will step in traffic on a busy highway and see how much of what my chances are. This is not attacking this young lady. It is just to say Low RISK , high RISK , there is a RISK.

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    3. PC does teach us how to prevent STD's and HIV, although I still do not not think it should be their responsibility. In addition, although yes all PCVs come from different backgrounds, it is a requirement that we all must have a college education. I feel anyone with such education has at least a basic understanding of how HIV is transmitted. Jessica has said herself she knew it was possible to receive HIV through oral sex.
      I would LOVE my tax payer dollars helping pay the medical bills of people with HIV rather than war. Although I would only feel comfortable if it was helping everyone with HIV, not just RPCVs.
      In regards to it being PC or FECA, the money all comes from the same pot and PC made it possible for the claim to be accepted.
      Ducky you said yourself PC should not be responsible if volunteers fail to practice what they are taught and either should FECA. I apologize if I am coming across as condescending. I only feel, as a RPCV, that I nor anyone else should be entitled to health care that the rest of society is unable to obtain. For that reason I felt she should count her blessings because having health care provided for life, regardless of who is paying the bills
      , is a blessing indeed!

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    4. I agree with you wholeheartedly! She says "they're trying." Given the circumstances, they shouldn't even BE trying at all! So definitely, be grateful that you are at least getting the help you are getting. Because if your case were investigated thoroughly, then you wouldn't be given a single penny. There are hundreds of people out there who probably contracted HIV the same way she did, yet you don't see their employers assume all cost of treatment. This post to me shows how she feels entitled to the money from the insurance, when in reality she shouldn't even be getting the insurance coverage.

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  3. I think one area to be clarified re: the above commenter, it is not actually the PC who is footing the medical bills (correct me if I am wrong, Living Positive), but instead of it being "PC deciding to pay your medical bills", it is a Federal (government) program that is providing you insurance based upon the conditionality that you incurred your illness while serving, in the same way a military veteran might be covered under the law. Therefore, it is our tax dollars contributing to this insurance plan. Personally, I am much happier to think of my tax dollars helping people like Living Positive and anyone else in a similar situation. Perhaps it can be seen as an offset to all our tax dollars that go to building an exploding bombs. I am all for covering the costs of health, as opposed to the costs of death.
    Furthermore, perhaps if our tax dollars funded better educational programs re: HIV/Aids and general sexual health in public schools, we would see a different kind of situation.
    Not to bring politics into this discussion, I just thought that was a point worth making in context of the comment above.
    Living Positive, please correct me if I am wrong in my assessment of who is actually providing you lifetime insurance. As always, I am so impressed by this blog and am happy to disseminate the work you're doing to anyone who will listen.

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  4. I think this is a very fair assessment of Peace Corps, they do try, and while they may not make the right decisions or make mistakes along the way, it's clear they care. I think most PCVs and RPCVs can agree on that point.

    Thanks for sharing your experience with PC and the diagnosis process. I'm sure your experience will help PC evaluate their systems and continue to make progress in this area.

    Also, not to belabor the points made above, but I completely agree, I am much happier having my tax dollars cover the cost of healthcare rather than the cost of war.

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  5. You said it fairly and well, Jessica. They sure are trying.

    Just for clarification: FECA can be a royal nightmare to navigate. It's not as we (med evacs) are proposed to about the ease of being medically covered for the rest of our lives (for terminal conditions contracted during service). It will be an ongoing communication battle for as long as our conditions require treatment.

    Also: I do think it's fair that certain medical conditions--developed at ANY time during service--be taken care of for the rest of one's life. The whole PC/PCV relationship is a give-and-take. Yes, we are informed of the risks of serving overseas, especially in such a harsh environment as Africa. We're shot up with required vaccines and put on a malaria prophylaxis. We choose to live in malnourished, poorly sanitized conditions. In return, we expect to be well taken care of should something life-threatening happen. People in Jessica's shoes are the extreme. It's not as if every PCV is abusing tax payer money. I bet if you were in a med evac's shoes, you would be having the same feelings as Jessica has expressed. Her frustrations and suggestions are not unique, and she quite humbly wrote about her experience. Well said, Jessica.

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  6. I'm an RPCV from Cameroon and I can vouch that PCMOs aren't always the most caring and competent medical professionals. I've heard PCMOs belittle a volunteer for his/her decisions. I have even seen a PCMO refuse to give STI tests to volunteers unless they have a reason and the only reason they accepted was if you admitted to having sex without a condom. They wouldn't test you if you said you had been having sex with condoms or if you didn't have any symptoms of an STI--very odd considering many STIs don't even show symptoms. Another volunteer was flat out refused an HIV Test and not given a good answer for why not, so he went down the street to a local clinic. Maybe Cameroon is an anomaly for having particularly bad PCMOs, but I often felt they weren't even trying and were merely attempting to keep their budget down.

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  7. I early terminated my PC service because I thought the organization was awful, uncaring, and completely disregards the needs of its volunteers. I'm not surprised they "forgot" to tell you your status. I have witnessed first hand how secretive and manipulative that organization is and I have no doubt it was purposeful.

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