Re: Response to Rupa Cinai's Article in Times of India

[Guest guest]

Dear Sathia,

Thanks for your response.

I can understand your feelings about HAART. But let me tell you as a

physician, a patient who gets severe fatal bleed after aspirin or fatal skin

rash after sulpha drugs has similar feelings. People walking in with

malarial fever have gone out dead from ICCUs. Anti-tubercular medicines have

played havoc with peoples livers and kidneys, still we use them, recommend

them. One has to understand the fact that every drug has potential side

effects.

We need trained physicians and proper guidelines for management. No

one knows what would be the scenario 5 years down the line but for the

present would you suggest that no one should receive HAART? What about the

thousands who otherwise would have been long gone without the support? What

about the thousands of babies saved of the infection due to prevention of

mother to child transmission due to these very medicines?

The improper use

of medications definitely needs to be made an issue, but certainly not in

the Times of India, which might prove to be a deterrent for millions seeking

and needing help, in fact this is likely to drive these very our own people

to the doors of the quacks (about whom we have been discussing on this very

forum for last few weeks - albeit helplessly.)

You write you have not read

the articles, please read them and then let us all know whether you believe

that there is nothing like HIV and in fact people are dying due to these

medicines which are being used strictly because the pharmaceutical industry

is twisting the facts.

I fully agree with you that we certainly need physicians who understand all

this. Unfortunately there are not many.

In the mean time I wish you a comfortable life despite all its limitations,

and hope something that might help you even in such a situation evolves and

becomes available for all those who need it.

Love.

Dr. Vinay Kulkarni

E-mail:<prayashealth@...>

[Guest guest]

Dear Forum Members:

This is in response to Dr.Kulkarni's message

responding to Rupa Cinai's article. I have not read

the artcile by Rupa yet, I would like to respond to

couple of points raised by Dr. Kulkarni.

While I know that such expressive and deep messages,

are not written for " response " , there are a couple of

lines I would like to respond to.

I would like add my views about HAART (Highly Active

Anti-retroviral Therapy) among HIV Positive People.

AND I AM WRITING THIS PURELY FROM MY PERSONAL

EXPERIENCE WITH HIV MEDICATIONS. I have just been

discharged from hospital after 34 days admitted, and

almost died just because of HAART. My liver enzyme

elevated dangerously high - 3199 against the normal

level of 8 to 40 and my Pancreas and liver is

permanently damaged nearly 50% and this is all

attributed directly to HIV Medications.

I do not

smoke, drink or use drugs so my life style is not the

cause of Hepatitis. Since my liver and pancreas is

damaged permanently, I can never be on any HIV

medication any more, as all the medications are

processed through liver and known to induce

lactiacidiosis (HIV medications induced hepatitis) .

And the irony is I need HIV meds more than ever

because my CD4 count is zero and my viral load is

nearly a million.

And I am not the only one to have experienced such

high toxicity due to HAART.Many people whom I know

have had similar experiences and doctors here in US

are more and more seeing such incidents. I think, from

what I have understood from Dr. Kulkarni's article,

Rupa had mentioned the toxicity of HIV meds.

Of course one can take the meds, as long as we are

ready to damage our kidney, liver, pancreas, get

anemia, get diabetitis, get neuropathy, get

lypodystrophy, get hiv related cardiac arrthrymia, get

seizures etc by taking the HIV medication. While I

strongly support that access to medication should be a

right and be readily available for those who make an

informed choice, while I share the same sentiment

with other forum members that the multinational

trade monoploy must come to an end as regards to

HAART,I also strongly feel that we must exercise

caution while we are speaking about HAART. As I have

lived and worked in India before I moved to States, I

am aware that many People with HIV in India do not

know the negative side effects of these meds and or

not in a position to make informed choice. And to them

presenting an image as if HIV meds can do wonder, I am

sorry, I respectfully disagree with Dr.Kulkarni in

this matter.

Again HAART works better if a positive person has a

roof over the head, have three times meal in a day,

have good bank balance (not to buy meds but to make

sure he has income to rely upon if he falls sick) have

a working watch (so that he can take meds on

schedule), have a working telephone (so that he can

call the doctor if he or she falls ill because of

medication or due to HIV, he can have access to his

Physician). Above all and most importantly, a Person

with HIV/AIDS should have a knowledgable and

compassionate physician, to trust and rely upon.

Without having any of these in place, starting HAART

is dangerous. This is my view.

I am looking forward to having thoughts from the forum

members.

Sincerely

Sathia Krishnamoorthy

E-mail:<sathyakrishna@...>

[Guest guest]

Dear Sathia,

We are an organization working on policy and human rights issues related to

HIV/AIDS. We read your response to the debate set off by Rupa Chinai’s articles.

We thank you for sharing your views and feel extremely concerned and sorry about

the suffering and the damage these drugs have inflicted on you.

In the midst of all the euphoria over cheap ARV’s, the increasing number of

reports regarding the high, even fatal toxicity of these drugs are going

practically unnoticed. I’m quoting some of these for the record and for the

benefit of well-meaning people on the forum, who might currently be campaigning

for these drugs.

" The Hit Hard Hit Early " therapy HAART, introduced in the US in 1996, was

claimed to have been responsible for prolonging the lives of HIV positive

patients by delaying the onset of AIDS. It remains a mystery how a therapy used

to " Hit Early " on HIV infections was found to have prolonged the life span of

the patients within a time frame of four years – since it was already

established at that time that without drugs, HIV has a latency of at least 5-7

years.

Now, four years down the line, the emerging evidence suggests that these drugs

might really be more of a nightmare than the ‘miracle’ they were once touted to

be. To quote just a few of the reports:

Reuters, Nov. 19, 1999:

" Liver disease has become one of the leading cause of death among HIV patients

at Massachusetts. Patients who take HAART were at particular risk because of the

drug’s potential toxicity to the liver "

The AIDS Reader, Nov. 16, 1999:

" Severe hepatitis has been reported with all of the currently available classes

of ARV agents "

BMJ, 15 April, 2000: " South Africa stops drug trials after five deaths "

South Africa's HIV/AIDS drug trials industry has been thrown into confusion

after the government had to intervene and stop a trial in which five patients

died. About 11% of patients in the trial showed signs of severe liver toxicity,

and serious allegations were levelled against the trial organisers that women

involved in one site of the trial had not given fully informed consent. It

involved the new drug nevirapine.

New Scientist, Dec 16, 2000: " No more cocktails "

" Four years of " hit hard, hit early " HIV treatment may be on the way out in the

US, as evidence mounts of the drugs serious side effects AIDS experts in the US

are about to complete a humiliating U-turn when the Department of Health and

Human Services launches its revised HIV treatment guidelines in January.

The revisions will underline the need to hold back from using powerful antiviral

drugs until the immune systems of HIV patients show significant signs of

decline. It reflects the view, long held by British doctors, that early use of

currently available drugs may do more harm than good "

New York Times:

" These toxic effects include nerve damage, weakened bones, unusual accumulation

of fat in the neck and abdomen and diabetes. Many people have developed

dangerously high levels of cholesterol and other lipids in the blood, raising

concern that HIV positive persons might face another epidemic of heart

disease''.

U.S. Issues Warning on Use of Anti - AIDS Drug, January 4, 2001:

Health-care workers who take nevirapine after possible occupational exposure to

the AIDS virus risk potentially life-threatening side effects from the anti-AIDS

drug, federal health officials said on Thursday. The Centers for Disease Control

and Prevention (CDC) said it found 22 reported cases of serious side effects

among people who took the drug fearing exposure to HIV. The side effects

included liver toxicity and severe skin reactions. In one case, a 43-year-old

health-care worker needed a liver transplant after suffering liver failure.

Dr. S. Fauci, Director, US National Institute of Allergy and Infectious

Diseases (NIAID):

" The longer we treat, the more long term toxicity we see " ,

Business Week, Feb. 5, 2001:

It’s become starkly clear that potent medicines have serious limitations. They

offer no hope of eradicating the virus. And their side effects – which include

heart disease and cancer – are far worse than originally thought " . " We’ve gone

from an era when most people were dying from the illness to a time when they are

getting complications from the therapy are almost as bad " " The alarming toxicity

of these drugs cause both known and unknown diseases "

Responding to this emerging evidence, the US federal health authorities issued

new guidelines on February 5, 2001. These guidelines backtracked on the

long-held policy of ``hit hard and early'', recommending that treatment for HIV

should be delayed as long as possible for people without symptoms. It also

insists on a number of conditions for the administration of these drugs, which

include patient education and involvement and the necessity of entering the

patient into a continuum of medical care and services to closely and constantly

monitor the effects of the drugs.

In the light of all of this evidence, it is extremely disturbing that to find

that physicians like Dr. Kulkarni continue to lay their faith on HAART. Surely

all of the above is not to be dismissed? Why can we not instead focus attention

as strongly on the other things that are known to increase life spans of HIV

positive people – like improved nutrition, giving up substance abuse, a healthy

disciplined life, positive frame of mind etc.?

Thanking you once again Sathia, for sharing your experience so that others may

learn. I totally agree with you that it is absolutely critical that patients be

given the right to make an informed choice by making all the facts available to

them. This I fear is not happening at all in all the hoopla about making these

drugs freely available in India.

With a lot of concern for what you have suffered, I wish you all the best and

hope a solution comes along fast.

Warm regards,

Anju Singh

E-mail: " jackindia " <hifd@...>