KUALA LUMPUR, March 19 — Some psoriasis patients get stigmatised at work because people mistakenly think it is infectious, said Nikmatul Azlan, a psoriasis patient.
In a report launch and webinar titled “Psoriasis lifting the burden of stigma and changing lives” organised by the Galen Centre for Health and Social Policy today, Nikmatul told the panel that patients, when diagnosed with psoriasis, take a long time trying to make their family members and colleagues understand their condition.
“We, as patients, normally when we want to explain to family members, it takes time because sometimes it suddenly appears (the psoriasis lesion), starting off with a plaque, scab everything scattered over the office,” Nikmatul said.
“So, patients normally for the beginning, will feel stress. We are also worried. Some of our psoriasis friends face problems at their working environment. Sometimes they will be isolated because people are afraid that their skin problem will be infectious.”
Consultant clinical dermatologist Dr Moonyza Akmal, during the panel discussion, stressed that awareness of psoriasis as a non-infectious disease has improved, but it can be better. Psoriasis is an auto-immune and a chronic inflammatory skin disease.
Patients who have psoriasis lesions on their face or hands face further stigma, including during handshaking.
“So, the stigma is still there. More awareness and educating the people is actually important to help the current situation,” Dr Moonyza said.
Research officer from the Galen Centre, Winnie Ong, said one in three psoriasis patients from the psoriasis registry reported that their condition has impacted their quality of life.
“When it involves sensitive areas like face, hands, or being involved in older age or someone who has higher levels of depression anxiety or stress, all of these lead to a lower quality of life as a direct consequence of a disease that may not be well managed,” Ong said.
“Disturbingly, people living with psoriasis are more likely to have depression and attempt or contemplate suicide.”
During the launch, psoriasis patient Nikmatul also highlighted how during the Movement Control Order (MCO), psoriasis patients face emotional distress due to the lockdown as they are not able to go out.
Sofia Lovi from the Psoriasis Association of Malaysia said that there were two patients who approached her association, asking how they can replenish their medications since interstate travel was banned. Despite the government lifting the MCO, interstate travel remains prohibited.
“Number one, you have to go to the police station and get permission. Already, you are suffering from the condition, you are going through the pain. What more you have to go to the police station, queue up there, travel,” Sofia said.
She said that that process itself can cause a lot of frustration among patients. Hence, the association advised patients to get their medications replenished at nearby hospitals instead.
Meanwhile, Malaysian Dermatology Association president Dr Noor Zalmy Azizan told the panel that the budget for biologics — a targeted treatment for psoriasis that benefit most patients — is usually given on an adhoc basis in government hospitals.
“Let’s say we have extra money in December…It’s not a proper dedicated budget,” Dr Noor Zalmy said.
The dermatologist, however, said before the Covid-19 pandemic, RM1 million was actually allocated for biologics, but things changed after Covid-19.
On the other hand, insurance companies also don’t cover the cost of biologics treatment at private hospitals. Biologics can cost patients RM50,000 to RM60,000 per year, depending on the type of drugs.
Hence, Dr Noor Zalmy pointed out that one way of moving forward for patient advocacy for psoriasis patients is through a joint effort by all psoriasis support groups and dermatology associations.