My name is Kay Pierce and I am a carrier of Brooke Spiegler Syndrome (BSS), a rare disease. I have watched my mother battle BSS my whole life, while I had to join the battle for my own skin for half of my life. BSS is a rare skin condition that causes benign tumors to grow under your skin, causing a multitude of bumps of various sizes to cover your head, face, neck and chest areas.

I have started a nonprofit organization called Finally Clear Foundation, Inc where I advocate for those with rare diseases. In doing so, I have found that people with rare diseases are being denied the medical coverage they need by both public and private medical insurance companies and plans. Here are 5 good reasons why rare diseases NEED (not just want) medical coverage. 

5 Good Reasons Why Rare Diseases NEED Medical Insurance Coverage:

1. Rare diseases- usually require the most expensive treatments to cure or make the condition more bearable by alleviating the pain that they cause.

2. Rare diseases- usually require a series of treatments that may last up to a lifetime if a cure is not found. It is a continuous process or requires a series of different treatments or procedures; this adds up rather quickly.

3. Rare diseases- are usually genetic, skips generations and do not target a specific class of people. They do not target only wealthy families who are able to pay out of pocket for expensive treatments and surgeries, they also severely affect families who live close to or below the poverty line.

4. Rare diseases- are usually mistaken as “cosmetic” surgeries and denied coverage because the reality of their effects to human life is “unheard of” or “majorly lacking research”. 

*Cosmetic surgery: is something that is mostly WANTED but is not NEEDED to enhance your physical LOOKS. Cosmetic surgery is to BEAUTIFY a life.

**Surgery for rare diseases: is mostly NEEDED to correct internal malfunctions of the body such as cells, tissues and organs. It also helps to mentally, emotionally, socially, physically, financially and spiritually enhance your LIFE and the lives of your family and future generations. Surgeries for rare diseases are to EDIFY and save lives.

5. Rare diseases are often denied coverage when it comes to medical insurance (even though the treatments are clearly medically necessary) while other conditions such as the following are accepted for coverage because of the same thing,  “they are deemed medically necessary or pertain to preventative health care”:

*Psoriasis
*Eczema
*Fungal infections
*Hives
*Warts
*Skin cancer screenings
*Mole removal
*Procedures like Mohs surgery
*Other skin cancer treatments

(2021). Retrieved 14 March 2021, from https://www.pacificdermatologyspecialists.com/blog/3-insurance-tips-for-your-dermatology-visit#:~:text=Skin%20Condition%20Treatment%3A%20If%20you,generally%20necessary%20for%20your%20health

Some of the conditions listed above are able to be treated with over the counter medications, creams or treatments that can be done at home, yet they are covered in most insurance plans by most insurance companies. 

So I must ask again…
Why are rare diseases STILL not covered by medical insurance?                     

It IS Time… See Me, Cover Me, Cover US....ALL of US!

 

TO DONATE DIRECTLY TO OUR ORGANIZATION:

For more information on how and where to donate to our organization, please visit us at: www.finallyclearforbss.com or www.facebook.com/finallyclearforbss