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People with lupus fight for their rights to medication
Tiara Savitri - JP/Hans David TampubolonA 2-meter square pink kilt hangs on a wall
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Tiara Savitri - JP/Hans David Tampubolon
A 2-meter square pink kilt hangs on a wall. Fabric patches with nine names are stitched to it. There is also a large print reading 'In Memoriam Odapus 2015'.
Odapus is the term used in Indonesia to identify people who suffer from lupus. Other kilts are nearby. They remember those who have died from the disease back to 2008. Each kilt contains dozens of names.
Indonesian Lupus Foundation (YLI) chairperson Tiara Savitri said that the kilts were made and stitched by lupus patients who she met throughout her 16 years at the foundation.
'Initially, they [lupus patients] hesitated about making these kilts. They wondered if they could, but after the first kilt was made, they become confident and we started making the kilts annually as a way to remember our colleagues who had left us and a mean to boost our confidence,' Tiara, who has suffered from lupus for 28 years, said at a recent seminar on lupus at the Russian cultural center in Diponegoro, Central Jakarta.
Tiara said it was important for people with lupus to remain productive and active.
It's a philosophy she puts into practice, such as when she, along with several other people with lupus, climbed Mount Everest.
'I had never climbed before, but I wanted to climb Mount Everest to show the world that despite lupus, I could do anything,' she said. 'The feeling that I had once I reached the summit cannot be described in words.'
People with lupus in Indonesia, however, continue to face an uphill battle.
There are 30,000 people in Indonesia registered with YLI, although the foundation estimates there are at least 1.5 million more people with the disease across the nation who have not been diagnosed, making it less likely they will survive.
Early detection is important to ensure that people with lupus can live longer lives or even overcome the disease, according to YLI counselor Zubairi Djoerban, who is also an infectious diseases physician at Cipto Mangunkusumo Hospital in Central Jakarta.
'Back in 1972, the mortality rate for lupus patients stood at around 50 percent. Now, with more knowledge about lupus within the medical profession, the mortality rate can be reduced to between three and five percent,' Zubairi said.
'In order to be properly treated for lupus, however, a patient needs to be quickly detected through proper diagnosis. An incorrect diagnosis will allow the illness worsen and in the end, make it even harder for us to cure the patient,' he added.
Lupus causes the body to produce an excess of antibodies, the cells that typically protect people from viruses and harmful bacteria. In lupus, the extra antibodies attack health tissues and cells.
Zubairi said that women developed the disease more frequently than men. 'Around 93 percent of lupus patients are women. The illness often occurs in the productive ages, between 14 and 40.'
It is still unclear why people develop the disease. 'It seems that lupus is triggered by a combination of genetics, hormones and the environment,' he said.
'Lupus is also known as an illness with a thousand faces. The symptoms can vary from one individual to another. There are people who have skin rashes or kidney failure. Some can even have minor heart attacks. Therefore, an accurate diagnosis is crucial.'
Tiara said that the main problem with lupus in Indonesia was a lack of attention coming from the government, which led to discrimination in receiving proper health care.
'The government and society need to start acknowledging our existence. We want to have proper medication and not be discriminated against,' Tiara said.
The government's Healthcare and Social Security Agency (BPJS) does not cover all the medication needed by lupus patients, according to Tiara.
'There are only a few medications that are covered by the BPJS. There are some medications not covered by the BPJS, because the agency thought they are not medicines for lupus patients or because they are still off-label products,' she said.
'The fact is that we desperately need those [drugs].'
For example, Tiara said that the BPJS was only willing to cover one bottle of albumin injection for a lupus patient.
'We need at least five bottles of albumin to be injected. One bottle of albumin costs between Rp 2.2 million and Rp 2.5 million. I once consumed 80 bottles of albumin to recover. Fortunately, I could still pay for them by myself, but what about patients who are from the lower income segments?' Tiara said.
'Covering five bottles of albumin costs less than a session of chemotherapy. So why do cancer patients receive full coverage and we do not? This is discrimination.'
The YLI sent a letter to President Joko 'Jokowi' Widodo asking that the government treat people with lupus as fairly as it does those with other diseases.
'The number 1.5 million that represents lupus patients might not mean much as a voter base, but behind those numbers are human souls desperately seeking for better medication to survive,' she said.
For more information, visit yayasanlupusindonesia.org.
