Bani Risset has just finished his lunch - it’s time to take his pills. After a month of using the new pills called Sofosbuvir, he feels better.
“Now I am really OK and excited. Despite having depression as a side effect, I am optimistic I’ll be far better soon - compared to the previous drug, which was really harmful,” he said.
Bani has Hepatitis C, HIV, and bipolar disorder. Many HIV patients die when they contract the Hepatistis C infection, which causes liver disease.
For months, he has been using Interferon injection to cure the disease. But the injections are as expensive as a brand new car and his body did not respond well to the treatment.
“I got a high fever. I prayed to God Allah Allah It was really hurt. I cried and my hair was starting to fall out,” he explained. “Every day was getting worse. Then they decided I could not continue using the drug.”
Recently, there’s a new medication called Sofobusvir, but it is way more expensive. One pill costs more than 80 thousand US dollars and the cheaper version is only available in India, Pakistan and Egypt.
There are nearly 200 million people living with Hepatitis C across the globe. And in Indonesia, 40 patients die every day becuase of the disease.
The National AIDS Group in Indonesia then decided to take the matter into their own hands. They got together with four patients who were desperate for the new medication. They provided money for medicine and trip.
Last July, Irwandy Widjaja from the group flew to India to buy the pills. He got help from a national HIV group in India.
“Everything went smoothly. When I am arrived at the hotel, I contacted my Indian fellow. The next day, they arrived on time and brought the medicine. I checked them out and I paid. They also gave me medical documents,” he recalled.
Irwandy brought home two suitcases full of the medication – enough for 6 months of treatment for 4 patients. No immigration officials inspected his belongings at the airport in India or Indonesia.
“These are for personal use, not for sale. Not different from people who went overseas for medical treatment,” he added.
Later that July HIV/AIDS activists held a protest, urging the government to make the medication available in Indonesia. Irwandy was also there along with nearly one hundred protesters.
“If the government gives us a permission letter to go and buy the medicine, and it is ready within 2 days, we will take it. We don’t take any financial advantage anyway,” he said.
The government says Irwandy has done drug trafficking – as government has not reached a deal with drug manufacturer, Gilead from United States.
“We are still negotiating to have a cheaper price. Gilead can give us more affordable price but they want to know how many pills Indonesia will buy,” said Sigit Priohutomo from Ministry of Health, adding that Sovosbufir will be subsidized - and probably included in the national healthcare system.
But the patients cannot wait. So now Irwandy is gettting ready to travel to India again to buy the pills to help out more Hepatitis C patients. Some 25 patients have already contacted him to get the medication for them.
“People cannot just die waiting. We know the medicine is available in another country at an affordable price. But they have to wait 1 or 2 more years. That’s not possible,” he stated.
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