CF Foundation

[Beowulf]

I wonder if the CF Foundation is in the business of helping CF patients or in the business of fishing for business for big pharmaceutical companies. What do you think?


After all, the Foundation has little to offer in terms of benefiting the average CF patient with financial assistance, medical coverage, or the assurance of accessible medicine.

All that money that is raised for the Foundation goes directly into the pocket of big pharmaceutical companies, and we all know how much money they waste on marketing and advertising, and how relatively little the spend on true R&D. Robert Beall's job, the president of the Foundation, is to raise money to give to these businesses, and to find other pharmaceutical companies to join their CF business machine.

I am not saying that the Foundation is of no service, but they carefully market themselves in a way to make the public think your money helps the average CFer on the street. The last benefit I received from the foundation, and I am not sure about this, was with the development of Pulmozyme, and that was just over 10 years ago. Not one new med has come down the pipeline that really changes my life or lifestyle for the better.

I question the Foundation’s motives and methods.

 

[jennifer]

It is always good to question the company's motives, finciiacial doing's and what not. Its people like you who help hold them accountable. Keep it Up! <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

yah i think the same thing!!!?!!! They really dont do much for the average joe with cf!!!! Maybe im just a complainer but i dont think that they are doing to much for us!!!

 

[ClashPunk82]

I have had bad dealings with the foundation. My mom and her friend used to coordinate the 65 Roses Ball and after a bit the foundation started dictating how they wanted it done and it was all about the money so my mom stopped doing the ball. The foundation is just in it for money, like every other company!!

 

[anonymous]

I would have to agree with you, yet I find myself still doing fundraising events for them in the hopes that those very things you said will change soon.

On another note, there are other CF "things" (lack of a bette word) which do help CFers financially and I do fundraising for them as well. If anyone is interested, there is the Milan Foundation, Lungs for life and Reach for the stars. If anyone is/has ever done fundrasing for CFF, maybe also consider adding the Milan Foundation, Lungs for Life and Reach for the stars-they recognize the importance of helping support the CFers that are living and here today. And I think that while although research is important, if we can't support those living with CF now who are struggling (financially, medically, pharmaceutically) then what is the point.


Julie (wife to mark 24 w/CF)

 

[anonymous]

I am going to take the Foundation's side on this and say that I am thankful for what they are doing to help Cfers. First of all, Pulmozyme, TOBI, etc. would not have been developed without the money. I do agree that it is an aweful big chunk of change, but there is a lot that goes into developing a drug...it doesn't happen overnight. As far as the Foundation not helping out financially, I am torn on that one. If they find a cure 10 years faster than they would if they spend money on the families, then I am all for 90% of the money going towards research. If you look at other charities that do give money to the families, they are nowhere near the CF Foundation in drug development.

 

[anonymous]

I kind of agree with the last poster on some things but also agree wiht Beowulf.

I do have to say that the reason why the other companies aren't as far research wise as the CF foundation is because they aren't around for that purpose. The foundations that I mentioned (Milan, Reach for the Stars, and possibly even lungs for life) SOLEY provide financial assistance to Cfers and their families. I brought up those foundations because they too survive off of only donations and if people don't want to donate to CFF, there are others out there that really NEED the donations and people to fundraise.

Julie

 

[thefrogprincess]

I agree that they could be better about helping families and individuals financially however, when they give money to pharmecudical companies there is usually a stipulation that the money must be used to develop meds that can treat CF. So when you see those ads for viagra or whatever be asured that the money for it didn't come from the CFF.

 

[2sickkids]

I think CF services is great they give kids enzymes and vitamins for free till after thier 2nd birthday. And they charge a 1/4 of the price prarmacy does for my boys creon. The day we found out my oldest had cf the ped called a scip in for me and I thought I was gonna have a stroke when the pramacist told me " that will be $487.58" when I went to pick it up. I asked how many pills were in there and the told me 100 But what could I do.

 

[jennifer]

I AM SO MAD! I just typed out a reply and deleted it by accident. Opps! Typing is not one of my better skills. LOL.

Hey Julie or anyone, Do u know the site to Milan Foundation, Reach for the Stars and Lungs for Life?

As far as the meds . . . My husband (Jeff-35) has always had problems w/ obtaining them. He would call in for a refill, only to get to the pharmacy and have them tell Jeff that he needs a preauthorization, real nice when he is out of that med. Or he would get them and the pharmacy would charge him a copay or some other. . . Other times (is that one word or two?) because of primary and secondary insurances, he would get a med that they say does the same thing but he would notice a huge differance in how it helped or didn't help him.

<img src="i/expressions/face-icon-small-happy.gif" border="0"> This next part gave us both a big grin. <img src="i/expressions/face-icon-small-cool.gif" border="0"> We thougt it was cool. <img src="i/expressions/present.gif" border="0"> It was a gift. <img src="i/expressions/heart.gif" border="0"> My heart was releaved. <img src="i/expressions/light.gif" border="0"> Someone was using their thinker. <img src="i/expressions/musicnote.gif" border="0"> I heard music. This is fun. <img src="i/expressions/rose.gif" border="0"> This doesn't pertain to the meds, but I wish I would've known about this site alot sooner. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jeff and I smiled. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I would've winked if I would've thought of it.

Last summer, Jeff went in hosital w/ pancreatius. Because of rounds, Jeff saw different Dr.'s. The two got talking about meds, and Jeff was saying how much trouble he had getting some of his meds. The Dr told Jeff about a place where he mite be able to get his meds easier. It took awhile to get everthing straight w/ paperwork. And that is understande! I mean, they wouldn't want anything to be sent to Jeff that he couldn't take. The only problem we have had so far- our faulght-is that Jeff ran out of something over a holiday, weekend or something. I forget which one. YEA!! CF Foundation!

 

[anonymous]

Jennifer, here are the links. You might have to copy and paste them into your browser because sometimes the links don't show up for me (I have computer problems too sometimes).

<a target=new class=ftalternatingbarlinklarge href="http://lungsforlife.org/">http://lungsforlife.org/</a> Lungs for life has $500 a year maximum assistance, they do this so they can help all those with CF who need the assistance. The only catch with them is that a social worker has to contact them on your behalf, they dont deal with patients directly.

<a target=new class=ftalternatingbarlinklarge href="http://www.r4stars.org/">http://www.r4stars.org/</a> Reach for the stars foundation

<a target=new class=ftalternatingbarlinklarge href="http://www.milanfoundation.org/">http://www.milanfoundation.org/</a> The milan foundation is wonderful!

Hope this helps you, and anyone who wants to donate-these are good causes to donate to as they help those with CF and their families pay when you are struggling.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

It would be nice if they offered assistance, but of course you all know that there are those that would take advantage of that.
I would say some financial guidelines should be in place for the lower/middle class people. Sometimes the middle class are the ones hurt the most, there often are state aid programs for the lower class, but us middle class people that make a little more than the poverty level, but still struggle immensely, could use the assistance too.
I hope the pharmaceutical companies are looking for a CURE, not just some expensive meds that will treat the symptoms and allow them to make bucketfulls of money at the same time. (TOBI, Pulmozyme). You can't tell me that those meds cost that much to make:0
I'll get off my soapbox now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I know what you are saying, my husband and I are in that middle class financial bracket (How, I don't know though). The nice thing about the assistance foundations I mentioned above is that they of course want information on all of your income. But then they also take into consideration all of your expenses (necessary ones) whether they are related to CF or not is irrelevant to them. They figure the difference between your income, your expenses and anything eles that might be going on and issue a check for assistance based on that. They don't do the "oh, you make X amount of $, you don't qualify". They look at the whole picture, which is really nice if you don't qualify for assistance from anything else.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

You know some say that there are powerful entities which are working to damn research and results from research related to genetherapy,and stem cell research on account of, if scientists were to cure in absolute terms many diseases using these methods (Cancer, CF, heart disease,...the list is endless) then the pharmacutical companies would be out of business. They would have no more diseases to manage (or at least dramatically fewer -$$). This is why Bush is against Stem cell research, not because of the religious questions, but because of big business. Politicians will be the end of us, moreover greed will destroy our society and civilization.