Rare Disease Awareness

This blog entry is a little different than my usual entries.  It’s not photography related at all. But I am using my photography page as a platform to spread the word and awareness about Rare Diseases.   A disease or disorder is considered rare when it affects fewer than 200,000 Americans at any given time.  Because of its rarity, there are usually no studies conducted and most treatments are off label uses of medications used to treat other illnesses.  Because of this off label use, many insurance companies refuse to pay for life-saving/life altering interventions.

I first learned about all of this from Rebecca Alves.  She’s a sweet and energetic woman who is a kindergarten teacher, wife and mother.   She is a warm and loving person – something you can tell the minute you meet her.  She’s full of life and vigor.  However, six years ago, before her doctor prescribed a course of treatment known as IVIG, this wasn’t the case at all.  Rebecca Alves has a rare disease called Devic’s Disease or Neuromyelitis optica (NMO).  It is an autoimmune, inflammatory disorder in which her own immune system attacks the optic nerves and spinal cord.  There are less than 1000 patients worldwide who have Devic’s disease.

Without treatment, she suffers from paralysis of her limbs, white-matter seizures, loss of independence, lack of coordination, and chronic pain. Before IVIG, she often needed to be hospitalized and missed work for great periods of time. It is a stress that affects not only her, but her family, her students, her friends, and her employer.

Unfortunately, her insurance company, GIC Unicare – run by the Commonwealth of Massachusetts – is forcing her to go back to that life. GIC Unicare has determined that her IVIG treatments are “not medically necessary and experimental.” Having such a rare illness as Devic’s Disease, everything is experimental. There has never been, nor will there ever be, a clinical study of any medicine. There just aren’t enough people affected. However, that doesn’t mean that those who suffer from Devic’s Disease should be denied medical treatment.  Her current treatment has allowed her to live a normal life – something all previous treatments (steroids, chemotherapy, etc.) failed to do.  IVIG actually has prevented attacks, not just treated attacks after they occurred.

However, Rebecca and others like her, who suffer from rare diseases, are just another number on the desk of a health insurance provider.  It’s easy for them to just stamp “rejected” on their claims.  But Rebecca is a real person with a real life.  Her life and the quality of it should not be arbitrarily left up to some big corporation or government official.    When her doctor writes a letter stating that this treatment is needed and medically necessary, that should be enough for a company to stamp “approved”.  But until everybody with a rare disease receives that kind of humane treatment, we must fight.

The outlook for Rebecca without IVIG is bleak at best. Without treatment, Devic’s Disease is often fatal within five years. Without treatment, permanent paralysis and blindness are inevitable. Without treatment, her 13 year old no longer has a mom.

Rebecca has applied for three appeals with GIC Unicare, and all three have been denied. Her treatments cost more than $10,000 each month. It is cheaper to deny services and hope that she does not require hospitalization, than to pay to prevent the inevitable. Rebecca is asking for everyone’s help to put some political pressure on GIC Unicare.  She needs the insurance company to reconsider and to pay for the only medical treatment that has positively impacted her life.  Let’s not just save Becka, but let’s save everyone with a rare disease, or at least give them the fighting chance that they deserve!

February 29th is Rare Diseases Awareness Day.  The “color” of this cause is “Zebra” or zebra stripes.   To raise awareness Miss Z Photography will be offering a 10%  discount for all photo sessions booked anytime in the month of February.   The shoot itself does not have to take place in February – it can be scheduled any time until the end of August 2012.  In addition to the 10% discount I will be offering, for every session booked, I will donate 10% to raise awareness for Rare Diseases.  So it is a win-win-win situation!  You receive a discount on your session fee, this worthy cause receives a donation and you have beautiful photos!

Please help spread the word and forward this blog to everyone you know!