AFRO-NETS> RFI: Help (looking for ARV medicines) (3)

[Janet Feldman <kaippg@earthlink.net>]

RFI: Help (looking for ARV medicines) (3)
-----------------------------------------

Dear Dawn McGuire and All,

Hello and fantastic to hear this suggestion, occasioned by a posting 
I recently made for an individual looking for treatment options for 
his sister and her child in Ethiopia. I am taking the liberty of 
posting this widely, as there have been many great suggestions from a 
number of sources for the individual(s) concerned, and your idea and 
inquiry below dovetails with a request I received this past spring 
from ACT-UP/Healthgap Coalition and someone at MSF to check with 
sources in Africa and the US about the availability of ARV treatments 
and details like costs, something I did not get much response on at 
that time (probably because so many of us are so busy acting up al-
ready!). 

Your own idea, as I read it, is for the website to act as a source of 
advice where there is some treatment availability, and I am wondering 
if that could be broadened to include the kinds of feedback and post-
ings which happened in reference to this one item, so people (lay-
people, medical personnel, researchers, NGOs) will get a sense of 
what is available (and not!), where, prices, and the like? This could 
be done anecdotally (like postings re: the immediate request) so that 
no-one will feel pressure to create an overall program or update the 
website daily, for example (i.e. something which could become onerous 
for any one person or group). This information is becoming increas-
ingly more critical, and not only with regard to Africa but elsewhere 
like India (I have also posted this to an India AIDS e-forum). 

A related inquiry, something which a friend at Physicians for Human 
Rights has been pursuing (he also posted for info on this and re-
ceived scant returns), is the state of health infrastructure in Afri-
can countries, and how that might be improved to deliver better 
healthcare, including access to ARVs and how they are handled once 
available.

I have recently been in contact with a range of organizations and in-
dividuals -- EQUINET, people looking for information on the upcoming 
International Education and Advocacy Summit ("treatment prepared-
ness"), and our own organization and numerous colleagues in Kenya and 
Africa with whom we network -- who would be eager for something like 
what you propose, I think, and there is also a group in Seattle WA 
called NCATA (Northwest Coast Alliance for AIDS Treatment in Africa, 
with which KAIPPG is affiliated) who I think would be as well (and 
somewhat local to you!). There may be some efforts in this regard al-
ready: there is an organisation in Boston called "Search for a Cure" 
which may have some of this info posted on its site (I believe they 
have this type of info at any rate, even if not posted) and I imagine 
that HealthGap, MSF, and others have been gathering same, though is 
anyone doing a website? And how about coordinating with e-forums, 
like P2P, GAA, KCA, AF-AIDS, AFRO-NETS, ProCAARE, CABA, OVC, Core Fo-
rum, AIDS-India, and others? ProCAARE may have something along this 
line with a forum, but perhaps not with a site such as you are pro-
posing.

Thanks for the wonderful suggestion and hope this can somehow be co-
ordinated and developed, as many of us would be grateful for its 
presence. I am sending this to several individuals as well, one a 
former volunteer now with Pathfinder International who has envisioned 
something along these lines herself, and hope that you will get some 
good feedback and potential partners. 

Many thanks to everyone who has responded to the original posting and 
will respond to this one, and all best wishes, 

Janet Feldman
Director, KAIPPG/International
mailto:kaippg@earthlink.net
http://www.kaippg.org



----- Original Message -----
From: "Dawn Mcguire" <dmcguire@eunoe-inc.com>
To: <People_to_People_Forum@yahoogroups.com>
Sent: Tuesday, January 21, 2003 10:37 AM
Subject: RE: [People_to_People_Forum] Fw: Help (looking for medi-
cines)


Dear Colleagues,

It is clear from recent discussions that an important service we 
could put together through P2P is a website where issues of treat-
ment, when it is available, and treatment choice, precautions, etc. 
could be discussed by a panel of experts. We could pull this to-
gether, I believe, fairly readily. There are many different opinions 
on some of these matters, but there also are some consensus positions 
which can be brought forth so that people can get the best of the 
(evolving) advice on HIV treatment in the settings faced in Ethiopia 
and other parts of Africa. We would need to get an easy-to-access web 
address -- easy to access from Africa as well as US/EU etc. We would 
need to select a small # of experts -- one or two in resistance pat-
terns worldwide, one in pharmacology and drug-drug interactions, one 
or two in general HIV medicine and management, one or two in patient 
education with relevant experience (i.e. Africa). A group of not more 
than 10, with e-mail exchanges among themselves prior to posting an-
swers or discussion -- to iron out "differences of opinion" -- would 
insure the best possible guidance. Undoubtedly the experts would 
learn a lot as well as they consider the issues Ethiopia and other 
countries in Africa face in attempting to treat those who may have 
access, by whatever means, to antiretrovirals.

I would be happy to assist with identifying participants and facili-
tating, and would appreciate knowing whether others feel this would 
be a helpful contribution.

All Best
DAwn McGuire MD
San Francisco
mailto:dmcguire@eunoe-inc.com



-----Original Message-----
From: Ayalew, Kassa <ayalewk@cder.fda.gov>
Sent: Mon 1/20/2003 5:25 PM
To: 'People_to_People_Forum@yahoogroups.com'
Subject: RE: [People_to_People_Forum] Fw: Help (looking for medi-
cines)


Dear Forum Members:

I do agree, the combo from CIPLA which contains 2 NRTI (D4T and 3TC) 
and on NNRTI (Nevirapine) is good and cheap. Nevertheless, it may not 
be the right combo to some people with HIV who may have underlying 
illness or HIV drug resistance. Before any one decides to purchase 
the combo, I would like to remind to have detailed discussion with 
the doctor or care taker. Find out whether the patient/s have any as-
sociated conditions with the HIV (like hepatitis or pancreatitis); 
similarly try to find out if it is possible to get the resistance 
pattern of the virus (may be I am unrealistic). If the virus is re-
sistant to the combo, it may be inappropriate purchase it. Therefore, 
it will be very important to have detailed information before one 
tries to purchase any of the anti HIV drugs. It will not beneficial 
to buy something that does not have an effect and have its own risk. 

Let us remember also, the drugs against HIV mostly should be taken 
life long. In other words, one should make sure continuity. The last 
important point is about changing of the drugs. If a change in the 
drug cocktails have to be done there should be a very good reason. 
One may need to change one or more than of the combinations. The best 
I would advice is to discuss it with a health care worker (physician 
or HAKIM) at the site.

Abyssinia



-----Original Message-----
From: Janice Price <janice@seanet.com>
Sent: Monday, January 20, 2003 10:30 AM
To: People_to_People_Forum@yahoogroups.com
Subject: RE: [People_to_People_Forum] Fw: Help (looking for medi-
cines)


I'm fairly sure you can get it cheaper in Uganda (Kampala) There is a 
combination made by Cipla with D4T, 3TC and Nevaripine in one pill 
(It's called Trio-something, I can't remember exactly.) This is a 
great combo-something you'll never see in the US because of the com-
peting patents. If your sister can tolerate Neverapine, it would 
probably be the best and cheapest first combination. Most people can 
take Neverapine if they "lead up" to it over a period of two weeks. 
The D4T avoids the anemia problem with AZT, but she must be on the 
look-out for signs of neuropathy. As for the infant, perhaps there's 
someone on this list with expertise in kids. Another alternative it 
to try to find a clinical trial, although I'm sure there are few, if 
any, to find. (I would love to be able to set up a clinical trials 
center in Ethiopia, offering good treatment trials, but the drug com-
panies seem indifferent to the idea for logistical reasons.)

Anyway, if you contact the women at TASO Mulago (The AIDS Service Or-
ganization at Mulago Hospital, Kampala), they can give you more in-
formation on the combo mentioned above. ?41-566-703/4 is the last 
phone # I have for them.

Best wishes,

Janice Price
mailto:janice@seanet.com

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