Cystic Fibrosis research does not receive as much attention and
funding as, say, Cancer or Leukemia. Currently,
States are in the middle of making important program funding decisions that
will greatly affect the availability of high-quality, specialized care for CF
patients. In addition, several States are proposing changes that will make it
even HARDER for CF patients to receive disability when they really need it. On
top of those looming possibilities, the government recently approved drastic funding cuts for medical
research and drug review. Please let state representatives know that this
funding is needed and is very important to someone you know! Also please take the time to let the Social
Security Administration (SSA) know that when CF patients get to a point where
the sickness will not allow them to work on a regular basis, disability is
important and necessary for CF patients!
As a CF patient, I’m sure that many “sick” people can
relate, having the money and INSURANCE to cover necessary medical drugs is
extremely important and often a frequent stress factor in life. Recently while on the CF Pharmacy website, I
discovered that the newest drug, Kalydeco, which I am not yet prescribed to take,
is almost $31,000 for 60 pills if I didn't have insurance! My nebulizer medicine is $2,657 for 30 days.
Another example is my Pancreaze enzymes which I must take multiple of each time
I eat. That’s $218 per month (give or
take). Sometimes, the future seems so unknown when it comes to being able to
pay for medicines so I can survive. At least I am fortunate enough to have the opportunity
to get medicine if I need it. Third
world countries have a much larger need and it’s hard for them to obtain the
necessary medicines. Worldvision.org
multiplies monetary gifts by 10 to
help those people in need. (Just thought I’d mention that!).
Well, April is almost over and May is within reach. I’m
ready for the sunshine (and exercise!). I’ve been a little sick lately but this
weekend it seems to have gotten a little better. Thanks for all the prayers and
support. You are appreciated and loved
back!