BY DIANE TALBERT
There are effective treatments for psoriasis available but there are big barriers to access affecting patients. Overcoming these and other challenges must be the first steps in improving the quality of life for psoriasis patients.
I saw a game show once where the question was, “what is the largest human organ?” One contestant said, liver and another one said, lungs. They were both wrong and when the game show host read them the answer, they were like, I don’t believe that. The correct answer was SKIN.
Yes, the largest organ we have is our skin. It had never dawned on me that skin is an actual organ, but it is. Skin is not protected like our other internal organs are. Our skin is our first line of defense and is visible and touchable by everyone.
Psoriasis is a skin disease that causes red, scaly skin that may feel painful, swollen or hot. People with psoriasis are at a higher risk of other conditions. These include psoriatic arthritis, heart disease, diabetes, high blood pressure and high cholesterol. I have all of these.
As a person who has had psoriasis for 55 years, I can tell you that it has affected my confidence and my personality. At times it has made me feel isolated and excluded. Psoriasis impacts how others view you. Just look at the history of how lepers were viewed and treated. I have felt like a leper for years, like an outcast.
I lived for years with people staring with disgust on their faces, hearing their ugly comments and pointing when they looked at me. People thought that if they touched me they would get it; if we were in the same pool they would get it.
My biggest fear now is that one day my insurance company will say, “Denied” and I will have to go back to that. Barriers to access can keep those of us living with chronic conditions like psoriasis up at night.
Those quality of life issues are why it’s so important that we with skin conditions have access to the best treatments available.
THE MOST EFFECTIVE TREATMENTS HAVE BARRIERS TO ACCESS
There are treatments available but there are big barriers to access in the way of them.
- Prior authorization – I have been through this many of times which has caused me delays in getting the treatment that I needed.
- Step Therapy – When your insurer insists on cheaper drugs before they cover the cost of the more expensive medication that your doctor actually prescribed. For instance, I was put on a low dose of a cancer drug and I don’t even have cancer.
- High Out of Pocket Costs – This could be your deductible, which you have pay before your insurance will start covering any expenses. My deductible is $3,000. Or you may have to pay a percentage of all health care costs depending on whether it is in-network or out-of-network, or depending on your level of coverage.
- Not Covered At All – You need to check with your carrier to see if the medication you need is even on your plan. Call your insurance company directly.
Treatments for psoriasis and psoriatic arthritis are very expensive. In fact, a 2015 study showed that treatment would cost an average of $25,796 per person per year. It also showed that the burden on the healthcare system is as much as $135 billion annually. For me, the biggest barrier to access I have encountered is when an insurer refuses to pay for a specific procedure or drug that a doctor deems necessary.
ARE BIOLOGICS THE ANSWER?
The high cost of biologics makes them hard to access for the average person with psoriasis. I was denied coverage by my insurance company and put on a cheaper drug. After one year I was finally approved for a biologic. To this day, I still need to get an approval every 3 months, a process where my doctor has to send in a special request. This has been going on for 12 years.
Once I get approved, my insurance company calls to tell me, “You are approved”. They also make sure to let me know that the cost of the shot they are covering is $21,000.
I have worked for over 40 years of my life. I have never asked for a hand out and have always paid my insurance premium. Why can’t I just get the service that I pay for?
Biologics have given many of us the best quality of life we have ever had and may be the best treatment option available. They have allowed some of us to walk outside in short sleeves, stop scratching and peeling, no more pain. Can you imagine feeling the sun on your skin for the first time? Biologics have the potential to set us free.
We have also been given a double whammy. Now we have something called “narrow networks”. Narrow network refers to low-premium, high-deductible plans with fewer in-network options. These networks — or lack of them — create lengthy barriers to access for some patients.
Dermatology is already a small field, this already limits our pool of doctors and hinders our access to quality care. In a narrow network, there are even fewer dermatologists available. Getting a timely appointment is virtually impossible, adding extra stress on us that we don’t need.
I have to wait 6 weeks to see a doctor. Is that fair to us? Expensive treatment options and fewer specialists who can prescribe them are making living with psoriasis much harder.
|Diane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has been an advocate for this disease for over a decade now. Diane has run support groups in the Maryland, DC and Virginia area, is a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis and stop the stigma associated with it. She loves being a wife, mother and grandmother.|