Wednesday, November 14, 2012

Doubtfully Optimistic for a cure

In a previous blog I spoke of CF Advances and my thoughts on it. In that post I stated that I didn't believe there would be a cure found in my lifetime. I still believe this and stated I would explain at another time, I think I'm ready to try and explain.

I want to go into this blog by stating that I completely believe and have faith in the CF Foundation and they do everything in their power for CF patients, new meds and striving for a cure. There is very much evidence to prove this statement, if you do some research you will find that the CF foundation does exactly what they say they do, and the money that is raised through and given to them absolutely goes to new research. I am not a pessimistic person. I am positive almost all the time and am highly annoyed by negative people, whiners, and complainers in general. I am also a realist. I always have faith and give a great deal of my troubles to God. But I also believe in the facts in society.

Disease is big business. Pharmaceutical companies make A LOT of money from drugs to treat disease. Let me give you an example.

Vertex executives said Kalydeco would cost $294,000 for a year's supply, placing it among the most expensive prescription drugs sold in the U.S. Specialty drugmakers are known to charge $300,000 or more for drugs that treat very small groups of patients.
"The drug is priced for the value it will deliver to this very small group of patients," Vertex Executive Vice President Nancy Wysenski told analysts.
Wysenski said Vertex would provide the medicine for free to people with no insurance and household income of $150,000 or less. The company will also cover 30 percent of copay costs for select patients who have insurance.

$294,000 a year, $24,500 a month, $6,125 a week, and $875 a day. Of course as stated they will help families without insurance, and with co-pays. But lets do some math, math was always my weakest subject so forgive me if I am wrong. Kalydeco helps about 5% of the CF population approximately 1,500 persons. 1,500X $294,000=$441,000,000. The reason the drug is so expensive? It only helps a very small group of people, meaning less is being manufactured which cost more. Which ever way you cut it that is a very large amount of money. The CF foundation works in collaboration with Vertex Pharmaceuticals and other companies to do the research and production of these drugs. They do this to expand greatly on the resources pharmaceutical companies have to labs and chemical compounds, improving there chance of getting these drugs developed. Vertex and other companies also invest in the drug research, giving them profitability. Now honestly I have no idea how much money they make from Kalydeco, and I find it somewhat comforting that they invest back into the CF Foundation. The CF foundation also funds programs for patient support and care.

This is only one example of a drug, a ground breaking drug in the CF community. But If you think of all the other diseases and drugs the treat them, there is a lot of money to be made. That is why I don't think there will be cure for CF or a lot of other diseases. What I do believe is at some point there may be a daily drug that will significantly slow or stop CF. That is like a cure, yes, but a cure to me would be something as simple a vaccine, or a simple procedure to fix the defect. Would I be happy with having to take a pill daily and stay healthy forever ABSOLUTELY! Like many do for many diseases. The bottom line to me is it's a business. The CF community always stays at about 30,000 because people are always dying and always being diagnosed. We are never ending money maker for these companies. I don't think they do this out of malice, and I believe their is many in the business to cure disease. There's just a lot of bureaucracy that goes along with it. Someone once told me "We can put a man on the moon, but we can't cure CF?!"

I really hope this doesn't come off as me being pessimistic or from a place of anger. I am not angry about it or nor do I dwell on it, it's just my honest opinion. I will continue to raise awareness and money for the Cystic Fibrosis Foundation and donate to other great causes working towards treatments for Cancer, Huntington's Disease, and many more. I will take as many drugs a day it takes to save/extend my life and raising and giving money to CF Foundation will lead to those drugs. Because although we may never have answers to these diseases there is always medical advances, and that is the next best thing.

Please visit and look through some of the info they have, you can read all their reports and view the drug pipeline showing which drugs are where in trials.

Monday, November 12, 2012

I love my little life!!

My Brother, myself, and Sarah his girlfriend.

Me, Grandma Mable, and Colton
I love my little life with my amazing husband, son, and dogs! I have had the most amazing 2 weeks filled with so much love I could literally feel myself overflowing! If you read my last post you know I celebrated my 30th birthday on Halloween, well I thought I celebrated it! Little did I know, I would really celebrate it the Saturday after. Brad my amazing husband, my Mom and family threw me a surprise party. I was completely clueless, blindsided, and surprised! The emotions I felt when I walked in that room were beyond words, I started crying, I was happy and so overwhelmed by the love I felt from everyone in that room! So many helped to make it perfect and make such amazing foods, all my favorites! I was shaking with excitement. It's so hard to explain how I felt. As I said in my previous blog I never thought I would celebrate this many years of my life. So many in my family have always held me so close because of this fear too, no ones ever came out and said that but I've always just been able to tell. There is so many people that mean so much to me. The obvious ones Brad, Colton, Mom, Dad, Brandon and all the rest of my immediate family, but then there are people who may not think there a big part of my life, that we may just be friends or acquaintances, little do they know they mean the world to me. Every person who comes into my life has an impact, it may be big, it may be small, it may even be bad, but it's all a part of my life making it a part of me. Just like CF. I only hope these people know the appreciation I have for them. The love of my family has no doubt kept me fighting so hard to kick CF booty, especially in the really hard times when I want to just give up. The thought of their love for me and the pain and disappointment it would bring them if I gave up brings me back every time. I love my family so much!! My cousins are more like siblings to me and the love and bond I have with them is really quite special. The younger ones being grown now and bringing significant others into the family that I come to love too! I can't even go into the love between my Grandma and me in this blog, but her impact on my life is beyond words! I have a huge support system and am blessed and very loved.
Horseback riding
Then less than a week later I got to go on an anniversary get away with Brad to celebrate our 9th year of marriage. We went to a beautiful bed and breakfast, Castle in the Country in Allegan MI. It was such a beautiful area and we got to go tour downtown Holland as well. We got massages, relaxed and re-connected! It was beyond amazing. We went horseback riding which I loved, miss riding so much! Ate at some great restaurants and went crazy in a candy store! Who could ask for more?! The whole time I just couldn't stop thinking I love my little life!
Out in front of the Bed and Breakfast

Downtown Holland
Also before my birthday Brad said my gift from him was to get a puppy, I had been looking for a few weeks any ways. So we went to the shelter.I went in thinking I wanted another big dog and a girl, because I'm surrounded by boys! Well I came out with a boy, Frank, who is a Dachshund/Lab mix! If your thinking about getting a puppy PLEASE visit your local shelter! You just will never know who will win your heart, like our little Frank did!

Frankfurt Pickard Purchase