Straight Talk

Hi

1. Charities generally depict CF folks as objects of pity. We have fatal diseases, we cost too much, we require lots and lots of time for treatment, etc. Charities do this because; lets face it they are in the business of getting people to donate, therefore…. And who would donate to someone that is coping while having more obstacles then normal. To define what I mean by coping, look at the chart below:



Thirty-seven percent of the folks are fully employed, that is 1 in 3 are; we even have 1% that is retired. In total 73% are employed in some fashion or is a student. Only 14% are disabled, that is only 1 in 7 are disabled. These statistics are from the "Patient Registry 2007 Report" by the CFF. Granted not everyone is coping but some/many are.

2. Parents do not let your F508 kids see how they are portrayed in most charities' web sites, because they may think that is how they are supposed to act. That is the surest way to get a bad result. Sure they have more restrictions; sure they have to devote their time to treatments, and such. But they should realize they can do pretty much what they want. Be that be a doctor, lawyer, house person, or…

3. Companies sometimes actually believe these CF depictions. I recently went to a CF event where one of the sponsors fired (ok dismissed) a person with CF because they cost too much in their health care. This to me seems hypocritical on both the Charity and the sponsor's part. At the very least, the company should have had the decency not to show, instead of taking bows as a concerned company that is helping (?) people with CF. (what's the expression: do as I say, not as I do?) I suspect that the charity was clueless on this, but….

Hi

Allow me to introduce myself. I was diagnosed in 1950 (March to be specific, but that was so long ago). During this time I have seen the average lifetime of CF folks increase dramatically, from a few months to about 38.5 years.

Now this is amazing progress much of it due to many folks, including Harry Shwachman. He once shared with me how he got started studying CF. He became interested as to why children, all exhibiting servere diarrhea, seemed to have 3 different outcomes. One group seemed to die from lung related problems, one group seemed to die from cancers, and one group seemed to have only dietary difficulties and lived a normal life span. Well today it is known that the first group today has CF, the second group has Shwachman Syndrome, and the third group has Celiac disease. The science has come a long way since the 1950s.

Because of this progress, I believe it may be time to assess what is needed for CF folks to achieve as normal a life as possible.

To me, in my arrogant opinion, what is currently needed to facilitate as normal a life as possible is two-fold:

1. A jobs program is needed.
   
2. Treatments are needed for the CF communicated diseases that prevent CF folks from getting together.

To point 1), today there are doctors, lawyers, accountants and scientists/engineers with CF. But getting and keeping a job is difficult. And although I see many high ranking corporate officials getting CF related awards for their great support of "CF charities," they do not seem go out of their way to provide any jobs for CF folks, and I speculate that in many cases their corporate policies hinder it.

For myself, as I recall, I had a two-interview job negotiation. The first interview was the standard one with a thesis review, lunch and several one on one discussions. The second interview was mandated by Corporate Medical, and was with Corporate Medical. The folks I would be working with and for attended my thesis review and were hoping I would accept their offer. Medical however had a different view and so setup a separate interview, flew me across the country especially for this interview. This interview was more contentious, and as I was answering the question as to why I thought I could handle the rigors of working at a premier research organization, I heard the interviewer say, "please turn your head and cough." Being rude, I answered the question is terms that questioned the interviewers training and current level of capabilities. Being aggressive, I got the job. But that was really insulting, the rehabilitation act of 1973 had already been passed, and the company was a monopoly so what choice did they have?

My dream is that the major charities would ask their CEOs contacts that support CF cure research into promising jobs for CF folks, including medical benefits. This seems to be a problem for smaller companies. They seem in many cases to be letting CF folks go once they achieve the medical waiting period. I guess they cannot afford the rise in their benefit costs to pay for the required medications. This may be wrong, but the government does not view CF as a different race, although we are, because just as race is causing inherited gene sequence/variation so is CF. So without public awareness of this difficult contradiction, we are stuck between a rock and a hard place.

To point 2), I remember large CF conferences and Christmas parties. But then in the 1950s, 60s, 70s, 80s, and 90s, it was then decided/recognized that CF folks could colonize each other with debilitating diseases, and the only way to prevent this was to shut down such get-togethers. Well this sends a bad message to prospective employers. I believe that they speculate that if CF folks can get each other sick, and can get other employees sick as well! As an example, a CF clinic in my area ran a one evening program were a lawyer with CF came to speak on CF issues. I called to accept and the sponsors freaked. They let me know I was not invited, to which I noted the invitation was sent to me. They responded that it was meant for my family, to which I responded that my parents were deceased, and my wife was busy, so I was the only one who could come. They said no way. So I asked if an audio bridge would be set up. With today's bridges and conferencing services this takes 45 minutes, they felt there was no time to do it in a week, so I gave up. Clearly something is rotten in Denmark. The other part of my dream is that research will find a real answer to this problem quickly.