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Profits from our misery

When he tested positive, everyone assured Red Trese that HIV is no longer a death sentence because of the availability of medication. “But this I discovered myself as a half-truth. My experience with the available ARVs in the Philippines was like a slow death,” he says.

“Twenty nine antiretrovirals (ARV) have been produced in 30 years, and that is almost one new ARV annually. But how do we make sure that they are available?” asked Esteban Burrone, head of policy of Medicines Patent Pool (MPP), at the workshop on ensuring lifelong HIV treatment for all at the AIDS 2014 Interfaith Pre-Conference in Melbourne, Australia.

I sat among advocates and keenly listened for answers to some of the problems I have been having with my HIV treatment in the Philippines.

“Many of the ARVs are patented and only the patent holders can sell the drugs. In effect, many continue to not use a good regimen in developing countries. Most new drugs are less than 100 mg, and then can be sold cheaper, and they have lesser side effects and better potency for the virus,” Burrone added.

Then I just remembered that for the most part of my ARV therapy (ART) in the Philippines, I have been through a drug regimen that apparently is not the best one.

When I tested positive, everyone assured me that HIV is no longer a death sentence because of the availability of medication. But I discovered for myself that this is a half-truth. My experience with the available ARVs in the Philippines was like a slow death.

After four days on my very first doses of ART, my whole body was covered with reddish-blue patches of rashes as if I was involved in some freakish initiation rite, and I had been paddled all over; and my fever shot up to 41 °C. I was alone in my room with no one to help or feed me. I thought nevirapine would kill me.

Because of this adverse reaction, my doctor shifted me to efavirenz (EFV). My nights since then were a trip. Around an hour after taking EFV, lying on my bed was always like being in a cabin inside a ship at sea. Dreaming was like being awakened to another reality. Feeling, tasting, and smelling everything in the dream was so real that I awake confused of what truly happened and what didn’t. The mental confusion made me feel I was senile and stupid. It started to affect my work.

Then I started to have intrusive thoughts of hoping that the plane I am riding would crash, a bus would side-sweep me, or I just jump out of a building. I also started to lose pleasure in all I used to enjoy.

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In the sixth month of my ART, I asked my doctor of these experiences. He told me to just ensure to take EFV on an empty stomach and drink plenty of water. After another six months, the dizziness, extremely vivid dreams, mental confusion, and suicidal ideations didn’t go away and I reported to my doctor. This time he told me to find a psychiatrist.

I knew I wasn’t crazy, the signs and symptoms were in all medical articles on what EFV can do. But with the seemingly dismissive response I got, it felt like a dead end.

A few months ago, I had a trip to Europe and my luggage was stolen. In my luggage were my ARVs.

I only had stock for a few days on my carry-on for the fear of being interrogated at airports. I obviously panicked.

I got help, and being in a welfare state was such a blessing. They gave me thorough tests. And then they explained to me everything abut what I have experienced with my ART in the Philippines.

What the doctor there told me just affirmed what I have suspected all along.

They told me that my current ART regimen – lamivudine (3TC), zidovudine (AZT) and EFV – wasn’t the best option for my current health. My kidney and liver enzymes were elevated, and – I guess I shouldn’t be surprised – my local doctor did not even mention this to me. My meds were starting to damage me.

Oh, by the way, there, they don’t use zidovidune (AZT) anymore due to its long term side effects. In their protocol, anyone who also experiences mental confusion, suicidal ideations, or vivid dreams for more than four weeks are taken off EFV.

They started me on a single pill of emtricitabin/rilpivirin/tenofovir, taken once a day with food. At the pharmacy, I got a year’s supply.

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But now I have a problem. ART is for a lifetime, and a bottle of my new ARV with 30 tablets costs P54,000. How in the world can I afford my new meds with my irregular income?

I shared this personal struggle to Mr. Burrone and said that my experience exemplifies what happens to people living with HIV, usually in developing countries, when ARVs are not available, or if they are available, they are too expensive, or are taking too long for to be made available.

“The reality is that the profit motive of pharmaceutical companies is the driver for new drug development. It is not because of patients in Africa, but is for patients in the US and Europe… We have to wait for six years before it is available in developing countries. It takes 10 years before it becomes a standard of care,” Burrone said.

MPP reported that the challenges in the access to newer, cheaper, and less toxic ARVs have been linked to the increased patenting of ARVs in developing countries for ARVs developed since 1995. This analysis is based on information for 75 developing countries accounting for 80% of people living with HIV.

“Fixed dose combinations (FDC) improve treatment adherence for adults and children alike. But patents on single ARV can block development of whole FDC. There are also patents on the combinations themselves,” Burrone added.

If patents continue to block the availability of FDCs in developing countries, would this likely or have already been a factor in experience in the Philippines of stock-outs starting in the last quarter of 2013 on the lamivudine-tenofovir-efavirenz supplies that came in as a three-in-one tablet (1,200 mgs)?

“We need to get the pharmaceutical companies to do more. Innovation without access does not serve any purpose. We should all work together to make the companies responsible in making drugs available. Pharmaceutical companies can keep the high income countries, but should allow the generic companies to sell in low income countries,” Burrone said.

I can’t help but feel so furious at the obscenity of this reality. As a person living with HIV in a developing country, I feel that these pharmaceutical companies are just amassing such wealth over my lifetime misery. It is just plainly wrong.

At the global level we have these patent barriers, and at the national level our whole health system struggles to provide the most basic health services to most of its citizens. For Filipino PLHIVs, these global and local disabling factors to access to treatment are aggravated by the steady increase of new infections per month, and the prevalent HIV related stigma and discrimination in the country.

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For Filipino PLHIVs and allies, the continuing dire reality of the access and quality of HIV treatment in the Philippines should be the wake-up call to redefine our advocacy and the start to reconsider activism.

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