Sexist Healthcare Policies are Costing Women Their Lives In Indonesia

It all started with a swelling on her neck. Yuniarti Tanjung, a mother of one and a corporate lawyer, noticed that her neck seemed swollen and tender. About seven months ago, thinking it was no big deal, she went to a nearby clinic to get it checked out. The doctors there told her that what she needed was far beyond their capacity at the clinic. Yuniarti was told to go to a hospital and get a biopsy. Within a month's time, what she originally thought was just a minor issue became so much more. Doctors told her she had breast cancer that had already metastasized, or spread, throughout her body.

But, the doctors said, there's a treatment out there—a medicine called Trastuzumab—brand name Herceptin—that, in conjunction with chemotherapy, has proven highly effective at treating metastatic breast cancer. Yuniarti began her treatment and felt optimistic about her recovery, according to a Facebook post by her husband Edy Haryadi detailing her story.

Then, the treatments stopped. Indonesia's government healthcare—BPJS—decided to stop paying for Trastuzumab, arguing that the drug didn't work. Edy, who took over telling his wife's story because of her declining health, disagreed with the government's decision. Sure, Trastuzumab was expensive, with some places charging as much as Rp 25 million ($1,700 USD) per-dose, but it's also effective, according to his own experience with his wife's treatment, as well as several peer-reviewed scientific studies.

"The medicine is indeed expensive," he wrote in a Facebook post that's since attracted a lot of media attention. "But, is the high cost a justified reason to discriminate [against breast cancer] HER2-positive patients from getting the best treatments?"

The BJPS told Yuniarti and Edy that there were several alternatives out there to Trastuzumab that the insurance would pay for, but Edy wrote that they never received a list. The couple instead filed a lawsuit against the BPJS and President Joko Widodo himself (because Jokowi is technically the head of the insurance program) challenging the decision to stop paying for Trastuzumab. Right now, the negotiations are ongoing.

But Yuniarti is still suffering. “Yuni Tanjung, it's an agonizing pain to witness you helpless and sick after the first chemotherapy," Edy wrote. "But I am happy that you are fulfilling your vows to keep fighting until death does us apart. [This lawsuit] is a manifestation of that vow."

It's a difficult story, one that pits a family struggling to beat a life-threatening disease against the cold, inhumane calculus of an insurance provider. But it's also indicative of a wider, systemic problem in Indonesia—the fact that our healthcare system routinely discriminates against women, often in ways that could make their lives shorter.

The BPJS itself is, financially, in troubled waters. When Indonesia rolled out its much-lauded universal healthcare scheme, it did so in a system where people routinely skip monthly payments and the tax base is shocking small (in a country of 255 million, only one million people actually pay their full tax bill each year).

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The BPJS is now facing a deficit of more than Rp 9.7 trillion ($670 million USD) after a large percentage of the people enrolled in the universal healthcare scheme (JKN) were unable to pay their monthly dues. The response from BPJS is to cut the treatments that it sees as too costly.

But a lot of the stuff BPJS won't pay for are treatments that could offer women longer, fuller lives. When BPJS cut Trastuzumab treatment from its list of covered medical care, it argued that it was only trying to trim expensive treatments from its budgets. But for women like Yuniarti, it's literally a matter of life and death.

"BPJS is treating life-or-death matters like it's business," Edy wrote on Facebook.

Let's take a look at how this affects women. In Indonesia, 43.3 percent of new cancer cases amongst women are due to breast cancer. That makes breast cancer one of the most prevalent forms of cancer in Indonesia, behind cervix cancer and lung cancer. It's also one of the most-treatable cancers out there, as long as the treatments are actually available.

With cancer, early detection is key. But in some instances, the national healthcare system puts the procedures needed to find cancer cells early just out of reach. Pap smears, a vital procedure to detect cervical cancer, aren't covered by BPJS. And at a cost of Rp 400,000 to Rp 800,000 ($28 USD to $55 USD), the procedure itself is too expensive for many Indonesian women to afford on their own.

The same is true for the HPV vaccine, which costs about Rp 700,000 ($49 USD) per shot, and also isn't covered. It takes three shots to complete the vaccine's course, and, again, those costs prevent most women out from ever getting it. The human papillomavirus (HPV) causes cervical cancer, and the most-cancerous strains of the virus are virtually untraceable in men and therefore most-easily spread (as opposed to the non-cancerous wart-causing strains of HPV).

The Ministry of Health is currently looking into covering the costs of the HPV vaccine, but no movements have been made on getting BPJS to pay for pap smears.

But the ministry would still have to convince doctors to provide women with needed reproductive health procedures without first asking them about their marital status. A post on a popular message board recently complained that a nurse refused to conduct a pap smear on her because she was still unmarried. "Ms., pap smears are only for Mrs.," the nurse said. "If you're still a Ms. then you can't do it."

The reason behind this answer is that healthcare providers still see pap smears as an admission that a woman is sexually active. And since, according to popular beliefs, she shouldn't be, then there's no reason to offer her a pap smear. It's a troubling, sexist assertion that only puts women's lives in danger by passing judgement against them instead of offering them needed care.

Indonesia's universal healthcare system is surely taking on water, but it's also throwing women overboard in an attempt to stay afloat. And, in the end, where's the care in that?