HIV Testimonies

Tuesday, January 08, 2008

Biggest hope: To live longer

By, Swatee Kher, expressindia.com, January 8, 2008

The new year is bringing new hope for me, of living and being able to raise my seven-year-old daughter. I want to live long enough to see my daughter grow up. I want to live for her. I hope we start getting the new medicines soon.”

For the frail and shriveled Sulabha Naik, an HIV-positive mother, the big new hope comes from the second line of drugs all set to roll out from the Anti Retroviral Therapy (ART) centres. They will help her body contain the deadly virus and perhaps stop her from moving to the AIDS-level. Though this single parent’s CD4 count — used to assess immune status, susceptibility to opportunistic infections, need for ART and for defining AIDS (if CD4 count is less than 200) — is over 600, she has suffered severe weight loss for a year now and she is suffering from side effects caused by two drugs she was consuming.

“I cannot afford to take the medicines from a private setup. I hope the government can provide us with the medicines through the ART centre. Sassoon Hospital had made a list of people who have developed side effects for the drugs and I am on that list,” says Sulabha, who works as a peer educator in Pune. Mumbai’s JJ Hospital will be the first in the region to offer the second line drugs.

A resident of Pune, she became aware of her HIV positive status in 2000 and joined the ART regime in 2004 at Sassoon Hospital. Her husband, also HIV positive, died a couple of years back, while her daughter is negative. During the initial phase of her disease, she even attempted suicide as family and friends suddenly turned them into outcastes.

Now, with the news of the second line of drugs to roll out at JJ Hospital and at Tambaram Hospital in Tamil Nadu, she doesn’t mind making a monthly trip to Mumbai.

Earlier this year, the National AIDS Control Organisation (NACO) announced the commencement of the second line of drugs after patients reported resistance to the first line of drugs being given since 2004 through ART centres across the country. According to NACO guidelines, there will be two sets of beneficiaries, one where first line therapy has failed to work and the other where there is a planned discontinuation due to side effects of one or more drugs from the first line regimen.

Sulabha, like hundreds of others in the country, is waiting for the NACO programme to roll out this month in Mumbai and Tamil Nadu.

In Chennai, S Manjula is waiting for the second line of drugs for her husband.

“You know, all the efforts in providing the first line of drugs for patients like us will be wasted if we do not shift to the second line. Even though I want to, I cannot afford to shift to a private setup for the medicines,” she says.

The criteria to select patients for the second line drugs have also been drawn up. A patient whose CD4 count falls below the base line after a high or persistently remains less than 100 is eligible, as also those who develop opportunistic infections and whose viral load count is 1,000 copies/ml.

“We are to start the second line of drugs in January. The pre-screening of the candidates is going on. We have not made the entire list yet,” said Dr Alaka Deshpande, who heads the ART Centre at JJ Hospital.

“This comes as a blessing. Patients are in need of the second line of drugs. We are waiting to understand how the plan for the second line of drugs will be rolled out in the state,” said an AVERT society official. “If patients get it through the government ART, it makes a difference in terms of finance. If they can save on the expenditure on medicines, they can spend on nutrition.”

“The second line of drugs are now needed as doctors tell us that there are more than ten per cent patients who are resistant to the first line here,” said P Kousalya, president of the Positive Women’s Network from Chennai. She, however, added that some centres started by the Tamil Nadu State AIDS Control Society were already offering the second line of drugs.

“There are perhaps two-three reasons which spell the need for the second line of drugs. One could be adherence problems among the patients for the drugs, which are combination pills. Second is resistance to the regime that is being given. And the third would be toxicity (side effects) of the drug in the patient,” said Dr Dilip Mathai of the Christian Medical College, Chennai, one of the members of the team that recommended the medicines to be included in the second line of drugs.

“I know that I have to change the medicines, but I don’t know what to change. After knowing the resistance test results I will know which class and domain to select from,” says Sulabha.

With the ray of hope on the horizon for her, Sulabha now wants the sun. She wants the medicine to cure HIV, so that “we can also hope to be rid of the disease and not just look forward to living as long as we take medicines.”


Source: http://www.expressindia.com/latest-news/Biggest-hope-To-live-longer/256313/

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