Painful, disfiguring and disabling, psoriasis has adversely impacted the lives of many patients, including wives left by their husbands. The social stigma is just a facet of its extensive physical, psychological and socio-economic burden. But hope is coming
The appearance of small vesicles (butlig-butlig) all over her body prompted Charito “Chit” M. Carorasan, a 60-year-old businesswoman based in Baguio City, to seek the help of a dermatologist to find out about her condition.
After some tests, the dermatologist revealed that she has psoriasis, a chronic, non-communicable, painful, disfiguring, and disabling disease for which there is no cure yet and with great negative impact on patients’ quality of life (QoL).
To make sure, Chit sought the opinion of two more dermatologists, who also said the same thing. “I was deeply saddened because I know this is chronic and incurable,” she said.
Chit was given medications, which she followed for the next three months. Medications include taking oral medicines and applying creams twice a day. She also gets sun exposure from 7:30 am to 8:30 am and bathes in the beach in La Union for 30 minutes to help dry the vesicles.
It’s been 13 years since and thankfully, she has never had any major attacks until recently so she is back on medications. But despite her condition, life and work must go on for Chit.
More than anything else, she feels more blessed than other patients because she has a very supportive, understanding, and loving husband, children, and grandchildren and a stable business to support her medications.
“I have to work hard so I can buy my medicines. My medicines are so expensive. But I don’t let my condition affect me so it won’t affect my family as well,” said Chit. “But you know, the real struggle here is applying creams and taking oral medicines daily, twice a day. Sometimes my granddaughter, Trisha would tease me, ‘Lola is connecting the dots’ again to lighten up my mood. But I believe God will heal me,” she said.
An incurable chronic skin disease
Worldwide, more than 125 million people are affected with psoriasis. Nearly 3 percent of the world’s population is living with psoriasis. More than one-third of patients with plaque psoriasis suffer from its moderate-to-severe forms. Most common symptoms include thick, red skin, scaling, itching, and pain.
Psoriasis affects 2-3 percent of the population. In the Philippines, about 1-2 million patients have psoriasis and 20-30 percent of these patients have moderate to severe psoriasis.
“Psoriasis is not just a skin problem. It goes beyond the skin,” said Dr. Deanna Ramiscal, head of the Photodermatology Unit, Dermatology Center at St. Luke’s Global City, who discussed “Managing Psoriasis: Breakthrough Treatment Offers Hope” in a recent health forum.
Environmental factors that may trigger the attack or flares of psoriasis include sore throat, alcohol, smoking, some drugs for hypertension, psychological disorders, and also stress.
The effect of psoriasis on patient’s quality of life is similar to diseases such as cancer (lymphoma), heart attack, arthritis, type 2 diabetes, and depression. Patients continually shed scaly bits of skin that litter their clothes and surroundings.
Many suffer constant pain from cracking and bleeding skin, and heartbreaking disappointment from ineffective treatments. Many patients have other organs of involvement like the heart. Most patients also have diabetes, maybe obese, have high cholesterol level, and problems with their liver.
A number of international studies also demonstrate that people with more severe forms of psoriasis have a significantly reduced life expectancy by four to five years. They die earlier.
Apart from shorter life expectancy, people with psoriasis bear the social stigma brought about by lack of information and misconceptions about psoriasis and because of these, most patients with psoriasis are also likely to develop psychological disorders especially depression and anxiety.
Psoriasis has a negative effect on the self image and emotions of the patients and these might be because of overt rejection from their family and peers and of a life always in hiding.
“Because they are rejected, these patients go into social withdrawal. It affects their social relationship and some of them may resort to alcoholism and drug abuse,” said Dr. Ramiscal.
Psoriasis has long been a misunderstood condition, and this contributes to the social stigma faced by about 2 million Filipinos who have psoriasis.
A psoriasis patient himself, Psoriasis Philippines (PsorPhil) president Josef De Guzman, understands and knows what it’s like to live a life with a disease as his successful sales and marketing career was cut short by psoriasis in 1996.
Since then, he became active in various national health campaigns such as cervical cancer, epilepsy, schizophrenia, haemophilia among others since 1999.
“Maraming sinirang pamilya ang psoriasis. If I’m going to start telling you stories of wives being left by husbands, of husbands being left by wives, of broken relationships because of psoriasis, we have a lot of those stories, endless, heartbreaking stories.” said De Guzman.
A study done in Singapore recently reported that 50 percent of the respondents will not eat food prepared by someone who has psoriasis, and this survey was done in a country that is already considered affluent where information is huge and awareness is so big and high.
“How much more if it is done in far-flung areas where there is lack of information or awareness on psoriasis? Can you imagine? Can you imagine a few years ago when a network pictured out psoriasis as a flesh-eating disease that spreads?” he said.
Psoriasis and psoriatic arthritis have been underdiagnosed even in the First World countries. In the Philippines, one in six patients doesn’t even see a doctor in their lifetime. No data is even available on patients who have psoriasis.
“Pangit, nakakadiri – these are the adjectives that go through our minds; fear of being unloved, unwanted. It doesn’t matter how severe our psoriasis is. These [feelings] comes to our mind that most people don’t know about,” said De Guzman.
Treatment options and medications
Traditional treatments for psoriasis include topical therapies (creams and gels), phototherapy and systemic medicines, i.e., treatments that affect the whole body. However, there remains an unmet need for new, more effective therapies that also act faster and last longer to relieve the pain, itching, and other disease-related symptoms.
Research illustrates that people with psoriasis regularly lack confidence in available therapies with up to 50 percent reporting dissatisfaction with their current options. Concerns about side effects and treatments not working have broader implications, with a survey of 1,095 people with psoriasis demonstrating they are the main reasons for discontinuing therapy.
Although the treatment landscape for psoriasis in the past years has significantly changed, there are still a lot of unmet needs and this should be addressed. Unmet needs include mismatch between physicians and patients’ perspective on psoriasis and its treatment.
What physicians might consider mild disease, patients might consider as severe – and this will result in suboptimal treatment. Most patients do not really get the right treatment for many reasons.
“Fifty percent of patients are actually not satisfied with the treatment that doctors give them and 30 percent of patients with severe psoriasis are not receiving treatment at all,” reveals Dr. Ramiscal. “In the Philippines, it’s probably more, 60 to 70 percent?”
Dr. Ramiscal added that for these patients with severe psoriasis, 20 percent of them are receiving topical (i.e., creams, ointments, lotions, and shampoos) therapy alone, which is not enough.
“Physicians assume that patients are scared or are worried about the side effects or safety of systemic agents and biologics so they prescribe topical therapies alone, but a lot of patients find topical therapies ineffective, time consuming, and extensive,” said Dr. Ramiscal.
Cost of treatment and medications are also a major concern. In the US, treatment costs USD 25,000 per year. Effective treatment remains high on the agenda for improving the lives of people living with psoriasis. Adherence to treatment is also one big challenge, not only to physicians, but also to patients.
For a more widespread disease, the involvement of the total body surface area is more than 10 percent topical therapy is not a practical option of treatment. For more extensive disease, another option will be phototherapy or artificial ultraviolet light. If the patient fails to improve with topical therapy and with phototherapy, doctors give them oral medication.
“But these oral medications have a lot of side effects. They don’t just go to the skin. They also affect other organs of the body (e.g. liver, kidney, and also the bone marrow). These drugs affect the immune system,” revealed Dr. Ramiscal.
New hope for psoriasis
Recently, a new class of drugs has been developed called biologics, synthesized by living cell. These medications are delivered through injection through the skin or veins.
According to Dr. Ramiscal, patients who were given biologics have reported better quality of life and they like the treatment. The only drawback for biologics is the cost – they are extremely expensive.
“Biologics are also called targeted therapy because they are very specific in their action. When the medicine is injected to the patient, it targets precisely a single cell in the process of developing psoriasis,” she explained.
Because it is a targeted therapy, the safety profile of this medication is better compared to the traditional medicines that one takes orally, which can damage one’s liver, kidneys, and other organs of the body.
Patients who have been treated with biologics experience fewer psoriasis-related problems and they reported greater treatment satisfaction. But in psoriasis treatment, the treatment goal is PASI 75, which means when the medicine is given to the patient, the goal of the doctor and the patient is 75 percent improvement from the baseline.
A PASI score is a tool used to measure the severity and extent of psoriasis (Psoriasis Area and Severity Index). If the patient achieves 75 percent improvement, it connotes adequate treatment response and the medicine is effective.
“But the problem is, PASI 75 is not enough for the patients because at this level, the patient still has the symptoms and these bother them. The patients want more. They want a higher level of response. They want clearance. And this opened the doors to higher treatment goals, which is 90-100 percent improvement,” said Dr. Ramiscal.
Studies have shown that patients who achieve a PASI score of 90-100 (complete clearance in their skin lesion) have better quality of life. Their daily living and activities were not interrupted because of the disease.