Arya Dipa, Bandung – The Syamsi Dhuha Foundation (SDF), a nonprofit organization representing autoimmune disease sufferers, has urged the government to pay more attention to people with immune-related conditions, who are much more vulnerable during the current COVID-19 pandemic, as medication costs have increased dramatically.
To mark World Lupus Day on May 10 and World Autoimmune Day on May 20, the SDF is making an effort to gain support and raise awareness about people with autoimmune diseases, such as lupus, with its #ShareOurLove campaign.
SDF chairwoman Dian Syarief, who is also an autoimmune disease sufferer, said it was an extraordinary time for her community as the prices for autoimmune drugs, including hydroxychloroquine (HCQ), which is also prescribed for COVID-19 patients, had soared.
"The price of HCQ has increased by 100 percent. We hope the government can regulate the price so that patients can still can afford it and other primary medications needed by autoimmune patients," Dian told The Jakarta Post on Saturday.
Dian said autoimmune patients needed one or two HCQ pills a day to alleviate joint pain and other medications such as corticosteroids to increase steroid hormones in the body, relieve inflammation and suppress the excessive work of the immune system.
She said the country was not able to produce its own HCQ until the end of 2019, when the domestically supplied immunosuppressant was sold at prices ranging from Rp 11,000 (73 US cents) to Rp 13,000 per pill.
"Since COVID-19 hit, the price has crept up steadily. It could reach Rp 22,000 per pill. The supply and demand has been out of balance," Dian said.
Dian also regretted the limited direct access to doctors, medical examinations or treatment. "Especially for patients who use the BPJS Kesehatan [the Health Care and Social Security Agency] service," she said.
Dian said the condition of people with lupus or other autoimmune diseases varied from the mild form, which attacked the skin or joints, to more severe conditions that attacked the blood or nervous system and even vital organs.
"We can't help but try to survive. That's why we also strive for personal protective equipment [PPE], medicine, as well as collecting donations for those who have lost income," added Dian.
The SDF has initiated the collection of donations for the procurement and distribution of PPE, including 2,000 nonmedical masks, for 16 autoimmune communities around Indonesia. Within three weeks, they managed to raise funds of up to Rp 141 million.
The organization has also provided aid that includes PPE such as medical and nonmedical masks and coverall hazmat suits, as well as multivitamins, to some hospitals and public health centers across Indonesia.
"Because of the PPE scarcity, the distribution has been done gradually, depending on availability, to nine hospitals and regional hospitals in Bandung, Cimahi, Cianjur and Majalengka [in West Java] and Medan [in North Sumatra]. We also provided PPE to six public health centers in Jakarta, South Kalimantan and Bandung," said Dian.
SDF manager Laila Panchasari said that in commemoration of World Lupus Day, the organization had also launched a membership card program in collaboration with two clinical laboratories, Pramitha and Prodia, and state-owned pharmaceutical company Kimia Farma.
"So, members can access generic HCQ and can get additional discounts for routine checks in the laboratories," Laila said, adding that the SDF had more than 1,000 members across the archipelago.
The membership number, however, is still small compared to the number of lupus sufferers in Indonesia, which Dian estimated at 135,000 to 270,000. Worldwide it is estimated that there are at least 5 million people with lupus, with 100,000 new cases every year. (syk)