HIV meds in DR?

jrzyguy

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May 5, 2004
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just got back from the DR yesterday...great trip...will write a trip report later

After running into a friend of mine who is very sick with AIDS (SIDA) there in the DR...i couldnt help but wonder and ask about the availability of medication and support for people in the DR who are diagnosed with the virus. My friend is very poor..has no access to health care and by the looks of things will probably be dead in the next year or so.

Hear in NYC...if a friend gets HIV...i do get ****ed because after so many years we should know how to protect ourselves.....but it still happens. Here in the states tho..it is no longer a death sentance as there are many good drug therapies out there. Talking in the DR tho...there seems to be no help at all for these people.

Can anyone recommend any organizations that i can contact either in the DR or in the US or elswhere that I might be able to contact to do some volunteer work for to help gets meds and hiv education in the DR? Seems like the US likes to throw its money all over Africa & Asia...but is doing nothing to help our neighbors in the carib.

This is the first place i am asking about this...so any links or information would be greatly appreciated. Also..feel free to PM me if you do not want to discuss this in the open forums.

Thanks!!! HIV does not have to equal death! and one can be sexualy active (myself for 41 years) and not contract the virus! Hopefully someone here can help point me in the right direction to help make a difference. If not in my immediate friends life...then someone elses

thanks again

jj
 

macocael

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Aug 3, 2004
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There are programs here, but alot of the effort is being focused on the bateys where the rates of infection are inordinately high. Copresida and a host of NGOs are doing various things, but it is not very well coordinated yet. The Clinton Foundation is down here as well, getting ready to distribute antiretrovirals -- in the bateys.

A lot depends on where you friend lives. If you can fill in some details I might be able to come up with the information appropriate to his situation and get him some help, although it sounds from your description that he might be beyond help.

Believe me, all the orgs are well aware of this problem and are scrambling to stem the tide, but it isnt easy, there are a host of logistical, political and other problems to surmount. If you want to be part of the solution, I can get you the contact info. The States is not ignoring the situation here, by any means. USAID is right in the middle of all this and is throwing money at the problem.
 

jrzyguy

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May 5, 2004
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thats sorta good news

and thanks for some of the org names. The clinton org is one that i have been interested in joining since he left office....now i have something that i can focus on and be passionate about.

my friend lives in san andreas...and is probably too macho to find help....but who knows....unfortunately...by the time i can afford to get back there..it might be to late for him....but its something that i would like to work on for the greater good and for the future.

thanks for the info
 

Hillbilly

Moderator
Jan 1, 2002
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1) It is never too late
2) He better get over the "macho" schitt
3) There is a lot that can be done.
4) Keep us posted, and If I see a friend of mine that is doing this work, I'll try and get back to you with better infor.

HB
 

MarkusL1

New member
May 3, 2004
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With MEDS it's never to late

Hello,
I just saw the story about the guy with AIDS and your comments about it.
Here are a few basic things everyone needs to know and understand before making comments.

1) People who are HIV+ don't necessary have AIDS or developing AIDS in the near future. Sometimes people will never develop AIDS even though they are positive (probably 0.5-2%). Most people contracting the HI-Virus and live without developing AIDS symptoms for 3-10 years (average).
The CDC recommends to NOT start HIV med's before the CD 4 cells fall below 350, unless there are opportunistic infections (which is seldom with a 350+ CD 4 count). By the way, the normal range of CD4's in a healthy person is 500-1200.
Some HIV+ people will not fall below 350 CD 4 count for many, many years and don't have to take any HIV medications until that level is reached.
Unfortunately that's also the reason why a lot of people don't know about their infection for many years and often infecting others without being aware of it...
If HIV+ people are aware of their positive status and reaching low CD 4 levels it's very likely that AIDS and death can be avoided for decades if proper medication is started right away.

2) There are some 25+ extremely good and powerful HIV med's available and much more under development. These med's will not only help people who are HIV+ but also people who have already full blown AIDS. In many cases AIDS can be "stopped" with med's and people can live very long lives (20+ years) if they are adherent to the med's and if the virus is not from the beginning resistant to all of the different medications.
Very important: It is NEVER to late to start medication!!! Even people with far disease progression have a chance to get much better and life for many years or even decades. (So please don't give up on above mentioned guy!!!)
The side effects of the never drugs are sometimes very low or at least manageable.
For HIV+ patients it's important to find an HIV experienced doctor and access to the medications. (By the way HIV med's cost in the US is about $1500-$2100 per month)
Many Third world countries now have programs for FREE HIV drugs. It's probably often very hard to locate these programs, but for sure important to try as much as possible. For many it could be a matter of life or death.

3) If somebody has already AIDS symptoms or the CD 4 count is below 200 (which is also considered an AIDS diagnosis, because opportunistic infections in the nears future are very likely) it's important to work on existing opportunistic infections or on the prevention of such.
Meaning: People in this stage of the have to start medication for HIV right away and get also treatment for the opportunistic infections.

4) EVERY sexual active person should test for HIV on a regular basis, regardless of sexual orientation or how committed the relation ship is he or she is in. It's a FACT that many people get infected by a spouse or committed partner.
Knowing about an HIV positive status as soon as possible will help a lot in preventing the disease to progress from "just" being HIV+ to AIDS. As mentioned before: AIDS can often be prevented if medication is used in due time.
Many people who are aware of their HIV+ status are able to manage their condition and life almost normal life's.

Here are some interesting subject related links:

www.TheBody.com (GREAT< great website with MANY comments by HIV experts)
www.Aidsmeds.com
www.ClintonFoundation.org <---- This org has funding for the DR!

Last but not least: I think it's great that some people on this board care to discuss help. HIV has a horrible stigma - especially in the third world. And even if there is not much funding for med's right now in the DR and other poor nations- we all can help a little. Sometimes talking or listening to a HIV+ person can make a big difference to this person and doesn't cost us much.


I hope I didn't flood you with all these information. I tried to keep it as short as possible.

Let me know if I can help with anything.

Best,



Markus
 

jrzyguy

Bronze
May 5, 2004
1,832
22
0
MarkusL1 said:
Hello,
I just saw the story about the guy with AIDS and your comments about it.
Here are a few basic things everyone needs to know and understand before making comments.

1) People who are HIV+ don't necessary have AIDS or developing AIDS in the near future. Sometimes people will never develop AIDS even though they are positive (probably 0.5-2%). Most people contracting the HI-Virus and live without developing AIDS symptoms for 3-10 years (average).
The CDC recommends to NOT start HIV med's before the CD 4 cells fall below 350, unless there are opportunistic infections (which is seldom with a 350+ CD 4 count). By the way, the normal range of CD4's in a healthy person is 500-1200.
Some HIV+ people will not fall below 350 CD 4 count for many, many years and don't have to take any HIV medications until that level is reached.
Unfortunately that's also the reason why a lot of people don't know about their infection for many years and often infecting others without being aware of it...
If HIV+ people are aware of their positive status and reaching low CD 4 levels it's very likely that AIDS and death can be avoided for decades if proper medication is started right away.

2) There are some 25+ extremely good and powerful HIV med's available and much more under development. These med's will not only help people who are HIV+ but also people who have already full blown AIDS. In many cases AIDS can be "stopped" with med's and people can live very long lives (20+ years) if they are adherent to the med's and if the virus is not from the beginning resistant to all of the different medications.
Very important: It is NEVER to late to start medication!!! Even people with far disease progression have a chance to get much better and life for many years or even decades. (So please don't give up on above mentioned guy!!!)
The side effects of the never drugs are sometimes very low or at least manageable.
For HIV+ patients it's important to find an HIV experienced doctor and access to the medications. (By the way HIV med's cost in the US is about $1500-$2100 per month)
Many Third world countries now have programs for FREE HIV drugs. It's probably often very hard to locate these programs, but for sure important to try as much as possible. For many it could be a matter of life or death.

3) If somebody has already AIDS symptoms or the CD 4 count is below 200 (which is also considered an AIDS diagnosis, because opportunistic infections in the nears future are very likely) it's important to work on existing opportunistic infections or on the prevention of such.
Meaning: People in this stage of the have to start medication for HIV right away and get also treatment for the opportunistic infections.

4) EVERY sexual active person should test for HIV on a regular basis, regardless of sexual orientation or how committed the relation ship is he or she is in. It's a FACT that many people get infected by a spouse or committed partner.
Knowing about an HIV positive status as soon as possible will help a lot in preventing the disease to progress from "just" being HIV+ to AIDS. As mentioned before: AIDS can often be prevented if medication is used in due time.
Many people who are aware of their HIV+ status are able to manage their condition and life almost normal life's.

Here are some interesting subject related links:

www.TheBody.com (GREAT< great website with MANY comments by HIV experts)
www.Aidsmeds.com
www.ClintonFoundation.org <---- This org has funding for the DR!

Last but not least: I think it's great that some people on this board care to discuss help. HIV has a horrible stigma - especially in the third world. And even if there is not much funding for med's right now in the DR and other poor nations- we all can help a little. Sometimes talking or listening to a HIV+ person can make a big difference to this person and doesn't cost us much.


I hope I didn't flood you with all these information. I tried to keep it as short as possible.

Let me know if I can help with anything.

Best,



Markus


Great info Markus. I know most of all this myself...as i dated a HIV poz person for years and have many many friends who are living active and healthy lives to this day.

What struck me in the DR is the lack of knowledge/education and ignorance (i dont mean that in a bad way) amongst many of the people i talked to. Someone basicaly said i shouldnt talk to so and so...because he has SIDA. THat infuriated me and also crushed my heart....to see someone alienated and stigmatized over his condition.

One day, while on the beach, i even had a mini lecture/education seminar with a couple of my "buddies" who are known sankies etc....and told them that indeed..one can be very sexualy active...and still remain HIV negative. I myself am proof at 41, have dated hiv poz people and through safer sex I still am neg. They nodded and i just impressed upon them to always use a condom while having penetration sex.

I am sure it might be difficult setting up some sort of outreach program in a town like Boca Chica or Sosua where the sex trade flourishes....but where better to start?

As far as my friend goes...i do not have his contact information...so i can only hope and pray he finds the information and support he needs so he can live a long life.
 

suarezn

Gold
Feb 3, 2002
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Jrzyguy: Hope your friend can get some help...I've known a couple of people in my hometown who died from AIDS, including one of my best friends. In the DR AIDS amongst the poor is almost always a death sentence...not due to lack of availability of medicines, but due to lack of resources.

My friend's case was particularly tragic. He didn't know or didn't want to accept that he was infected until he had full blown AIDS. I tried to help as best I could but it was too late...He has three young kids and two of them are HIV positive from what I've been told.

After he passed away his wife (who happens to be very pretty) left the kids with the grandparents and moved to Bavaro area. Supposedly she just says that she's not going to let the worrying about the disease kill her so she's just going on with her life as usual. Sad thing is that she's going out with guys (tourists and Dominicans) in the Bavaro / Punta Cana area. These guys are completely ignorant of the fact that she's HIV positive. Just imagine the guy that goes to Punta Cana for a vacation, meets this gorgeous woman and has unprotected sex with her (I don't know if she has unprotected sex) then goes back to his country thinking he got lucky...
 

macocael

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Aug 3, 2004
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Markus, that is great info, and you are right one shouldnt give up -- also because word of mouth assessments of a person's condition can often distort the actual situation. And it is never too late to start people on meds.

However, antiretrovirals are not readily available here, all the international orgs are in the midst of scrambling to distribute them, much of the effort is focussed on the bateys because that is where the need is greatest, and even now many such orgs are still just assessing the situation, providing diagnoses but are unable to follow through.

It is true that a person should get tested, but that is not a universal option here either. NGOs like Profamilia, which is connected to Intl Planned Parenthood, and is local NGO that works, really superb clinics and outreach, are providing testing and therapy to people both inthe bateys and in poorer barrios, but there needs to be a national coordination of all such efforts in order to provide an effective reaction.

The Clinton foundation office down here, unfortunately, is in confusion and is not providing any effective coverage at the moment, but they are in the midst of setting up an ambitious program involving a mix of clinical centers in various provinces that also provide mobile outreach -- this two pronged approach is crucial if they are to get to everyone. There are all kinds of reasons for this, and I wont go into them here, but if anyone wants details, just contact me. I am not sure that the Clinton office would take volunteers -- except those that live in the communities they are targeting, but it certainly wouldnt hurt to enquire. However, let me clarify that they are only working in the bateys. Any Dominican inthose areas would of course be able to seek help from them, but the Clinton Foundation will be of no help to those working the resort areas.

These programs are all combined with educational outreach to diminish the stigma involved, and that is working well. You would be surprised how some attitudes are gradually changing, even in the most remote areas. The orgs train local "promotoras" who then return to their communities and educate people about the facts, and through their example, caring for people, providing solace, they help to show that there is no reason to shun those with HIV and AIDS.

Finally, as for the sex workers, these people too have resources, and the govt, through Copresida, has clinics where these people can seek help. There is not enough educational outreach, possibly, so they may not always be aware of their options.

As for the fellow in San Andreas -- you have no contact info whatsoever, no clue as to where to find him? I might be able to come up with a solution if I had something to go on.
 

MarkusL1

New member
May 3, 2004
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Hello Macocael,

Thanks for that overview about HIV/AIDS prevention and support activities in the DR. I'm sooooo happy that there is at least education and actual change of peoples attitude about HIV as well as some clinics working with symptomatic patients.
You seem very knowledgeable - are you working in this field?
Would be great if you could post more about it on this board.

Best,

Markus
 

macocael

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Aug 3, 2004
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www.darkhorseimages.com
Yes, I was working with Profamilia and a bunch of local NGOs on a project as an outside consultant, as well as with the Clinton office here on a separate project -- again as an outside consultant. But for now I am involved in other things, and for that reason my posts are a little sketchy. A lot can happen in a few months, and for all I know the Clinton foundation, for example, could have ratcheted up their activities -- i know that Profamilia has. But I keep my hand in, and will probably return to the fold when there is an opportunity. If anyone needs anything specific, feel free to contact me, and I should at least be able to point you in the right direction.

Volunteering is a great idea, as orgs down here can always use a helping hand, and it is a nice way to return some loving to the people who make your vacations or your stay here so memorable.