God, AIDS, Africa & HOPE

Reflections / Gedanken

From Internet worries to gay conversion – moments of a week’s work

Often when people make contact with me or it comes to a meeting they ask what a  typical week looks like for me as a priest and AIDS activist and the only thing I can say is: There is no typical week. A lot of time this week was spent on HOPE Cape Town affairs: we getting used to a new computer system which records every meeting, every result thereof and to do so, one needs some training and motivation to get used to it. How much bits and pieces of information gets lost when one not religiously records encounters, offers and follow-ups during the day? I can tell, it is amazing and the older one gets, the less one remembers with all the information streaming in every day. But HOPE Cape Town also changed this week service providers for the internet, email, web hosting etc. and as expected, there are some problems arising until everything is settled. Not being able to access email and information is very disruptive in our days and once again one is reminded how much we depend on it. Connected with this was a meeting with TBWA – a well-known marketing / advertising company in South Africa which does pro bono work for us. After re-designing our flyers it shifts now to our webpage which will be the next object of reflection and changes. All has to do with branding and getting the brand “HOPE Cape Town” known and identifiable in using all instruments available in this department. Doing good and getting the message across is so important , from an informational point of view as well as from the fundraising aspect. Another aspect of work this week was to go through the new employer handbook for HOPE Cape Town – we have to adhere to the South African labor law and this is indeed changing again and again. So the newest version was checked by labor lawyers and now we have to finalize it before it is handed out to the employees of HOPE Cape Town and forms then part of the work contract. On Wednesday I also met with all HOPE Community Health Workers on the issue of the “bonus” to be paid out at the end of the year. Obviously everybody likes a bonus to shop for all the Christmas presents, but a bonus is always at the discretion of the board. It also is a result of merit assessments – and once in a while one has to remind employees that a bonus is paid for exceeding expectations at work; not for doing what one is paid for anyhow. On the other hand it must be clear-cut how an assessment is done and what tick boxes are important to receive a bonus. Surely all important discussion points. HOPE Cape Town also secured it’s first official HOPE Cape Town Ambassador – watch the space, I will not tell here and now who was chosen and accepted gladly.
What else happened the last week?
The Southern African – German Chamber of Commerce and Industry hosted a luncheon with MEC Alan Winde. As a member of the Regional Council I attended this event and listened carefully what Alan had to say about the state of affair when it comes to business and investment in the Western Cape and in South Africa. As new legislation comes into effect regarding BB BEE coming year it is also important for HOPE Cape Town to know the next changes we are BB BEE approved and we would like to keep it that way.
Bavaria and the Western Cape celebrating 20 years of partnership next year, so a meeting to find out how HOPE Cape Town can participate in these events in Bavaria and showcase its contribution towards the partnership.
A meeting with Rev Ryan from the Philippines saw discussions about HIV / AIDS support groups in this part of the world.  I learned that the Catholic Church in the Philippines supports conversion programs trying to get gay people straight – quite shocking for me – as this runs counter all academic research and adds to the burden to people anyhow threatened by HIV and AIDS and the difficulties to come out in a very Catholic environment. It surely adds to the shame people feel as being HIV positive and gay at the same time as it implies that there is something wrong with them besides the punishment of HIV. Somehow the expression “dark middle ages” came to my mind. Conversion as a possibility to get rid of being who I am is on an ethical level as bad as criminalizing is on a legal level. I once again realized how much is still to do….
Exhalation of the Cross – the Catholic Feast celebrated with the Catholic Community in Belgravia ended a week – being reminded of all the crosses people carry and are burdened with and celebrating our believe that the good message of the kingdom of God is told to all and everybody – unconditional love, that’s what we are called for.  And that is a good starting point for the coming week which will bring me to Europe again for a couple of days.

Filed under: Catholic Church, General, HIV and AIDS, HOPE Cape Town Association, HOPE Cape Town Association & Trust, HOPE Cape Town Trust, Networking, Politics and Society, Reflection, Religion and Ethics, SA-German Chamber of Commerce & Industry, Society and living environment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

Internet based health tracker

mobile phone mast

mobile phone mast (Photo credit: osde8info)

My Health Tracker is a webpage under the “thebody.com” and it can help you organize your HIV treatment information privately and securely in one place. This way, you can take better charge over your health and keep track on what you are doing and how you take your medication.Whether with computer or cellphone or mobile tablet – all these items turn into a source of support. My labs keep track of your laboratory blood results, My meds helps you to list all your medication taken. My journal allows for a sort of diary and My reports let one create various graphs and reports to be printed out and take for example with to your doctor. In one word: An amazing helpful website recommended for those anyhow connected to internet via modern communication tools. And frankly: most people even in South Africa have a cellphone which can be used for social networks like Facebook. So it is simple just to add another and this time life-supporting tool for those living with the HI virus. To get to the relevant page click here.

Filed under: HIV and AIDS, HIV Treatment, Medical and Research, Uncategorized, , , , , , , , , , , , , , , , , , , , , , , , , , ,

POZ magazine: Internet based HIV care

A group of HIV-positive people who received their health care via the Internet from a Barcelona HIV clinic felt that their care was comparable with—and potentially superior to—standard in-person care. These findings, published January 21 in the online journal PLoS One and reported March 21 on the website Computerworld, could offer hope to select patients in rural settings who must often travel great distances to receive specialty HIV care. By necessity, providers in resource-poor nations have been quick to adopt electronic communications as ways to provide health care. In countries where people are sometimes more likely to have access to a cell phone than running water or transportation, and where they must sometimes travel 100 miles or more to see a doctor, “e-medicine” has significantly expanded the reach of traditional health care.
Developed countries, including the United States, have been much slower to adopt these new technologies, partially because of concerns that e-medicine would result in poorer care, along with legal concerns about patient privacy. Recent positive experiences with using the Internet and telephones to extend and improve care for people with chronic diseases, such as diabetes, are beginning to tear down the walls that have kept e-medicine from wider implementation.
To determine whether e-medicine could be used in caring for people with HIV, Agathe León, MD, from the University of Barcelona, in Spain, and her colleagues set up a virtual hospital system in 2005 to help streamline care for patients in their HIV clinic. During the first two years of operation, León’s team tested its Internet-based system involving 83 HIV-positive people who were in stable health and had CD4s over 250. The study did not require participants to have an undetectable viral load or to be on antiretroviral (ARV) therapy—though about half were. All participants had a home computer and broadband Internet access.
Over the first year of the study, half of the group received their HIV care, pharmacy consultations, psychological care and appointments with social workers over the computer, while the other half received traditional in-person service. After one year, the groups switched their mode of receiving care. Participants went into local laboratories for any necessary lab work.

León’s team conducted detailed surveys of the participants throughout the study to assess their satisfaction with the care, their psychological health and their quality of life. Each participant’s CD4 count and viral loads were also recorded.
León and her colleagues found that patient satisfaction was high and that overall health and well-being—including CD4 counts and viral loads—were no different between those receiving care through the virtual hospital and those being seen at the clinic. This held true despite the facts that 7 percent started antiretroviral (ARV) therapy during the course of the study and 28 percent switched therapy. In fact, 85 percent reported that the Internet-based system actually made it easier for them to access the care they needed from their providers.
León reported that 200 people with HIV have now been followed through the virtual hospital.
“This program allows patients to continue their treatment without altering their routine. Medication is sent to their home, or other locations specified by the patient,” representatives for León’s clinic stated. “Telemedicine is emerging as a service appropriate for this treatment, and [the virtual hospital] as a safe and effective tool.”
It remains to be seen whether, or how, systems like these could be used with difficult-to-reach populations such as those with less access to modern technology, but experiments to test this are ongoing, especially in rural settings where access to quality health care is more challenging for people with HIV and other chronic illnesses.

Source:  http://www.poz.com/articles/hiv_emedicine_internet_761_20118.shtml

Filed under: HIV and AIDS, HIV Treatment, Medical and Research, , , , , , , , ,

R.I.P. Dr Robert Frascino

HIV and AIDS are not knowing boundaries and the internet is one of the excellent tools to connect people. And astonishing enough you get used to people you don’t know at all but somehow you feel attached. I would say all people living with the virus or working in the field of HIV and AIDS know about the website: thebody.com. A vast source of information and people can write with their experience and problems and there are doctors answering those questions – which means that others can also benefit from the answers by reading them.

Robert James Frascino, M.D. was one of those doctors working for the website and he passed away a couple of days ago – age 59 years old. Known as “Dr. Bob” to so many, he was incredible and inspiring and I loved like thousands others to read his responses: they were qualified but full of compassion, humour and somehow hitting the nail. Dr. Bob was a brilliant immunologist who was working in HIV well before he became HIV positive in 1991. In the mid-90s, he and his husband, Steve Natterstad, M.D. formed a charity called The Robert James Frascino AIDS Foundation which has raised more than $1,500,000 for various HIV/AIDS causes. Each year, Bob and Steve, both pianists, perform at their benefit called A Concerted Effort.

Bob started working with TheBody.com in May 2000 in the Q&A forums. He has touched millions of people through his Q&A forums on HIV prevention and HIV-related fatigue and anemia, as well as his blog. He answered nearly 30,000 questions over that time period — truly astounding. No matter how insane or serious the question, Bob always found a way to bring humor to every response. He never sugar-coated anything, never shied away from his political inclinations and never met a pun he didn’t like. His singular wit made his forums a must read for HIV-positive and HIV-negative people alike.

Dr Bob was one of the familiar faces on the internet, which I grew attached to. And I always promised myself, that my next travel to the USA will include a try to visit him. I truly believe that he was one of the few people who celebrated life to the fullest but at the same time cared much about his fellow men. I will somehow miss him and his answers…… R.I.P.

the late Dr Robert Frascino

Filed under: HIV and AIDS, HIV Prevention, HIV Treatment, Medical and Research, Networking, Politics and Society, Reflection, , , , , , , , ,

04.09.2009 and also @ facebook

Communication is essential and you will find HOPE Cape Town meanwhile on twitter and also on facebook.

http://apps.facebook.com/causes/339124/77594938?m=1a240be5 or better Support HOPE Cape Town is the link to go – and I invite all and everybody who is already on Facebook to log in and join the good cause. You will get updated information, can see some pictures and you can sense that you are belonging to a every day growing family of HOPE Cape Town ambassadors – highly appreciated and needed in our days.

And the best is: It does not cost you a cent to join and add your voice for a good cause.

Filed under: General, HOPE Cape Town Association & Trust, Uncategorized, , , ,

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