Money and CF

Question

Hello,
I would like to know why there lacks so much money in the fight against cystic fibrosis, and how to fix it ?
Thank you in advance.

Answer

Hello
We wish to inform you that funding and significant resources already exist in France.
This means public
- For research: structures, premises and equipment existing in basic research (CNRS, INSERM)
- For the care and support: dedicated services in hospitals (CRCM), hospital teams and refund 100% of the majority of prescribed CF care.
- Finally at the social level, access to benefits and assistance due to illness

In addition, the association Vaincre la Mucoviscidose funded largely by donations, finances actions to have additional items:
- From research programs dedicated solely to cystic fibrosis and to specifically target the disease
- Positions in the CF centres dedicated to the hospital in order to promote optimal quality of care
- Additional financial support for patients and their families
"Vaincre la Mucoviscidose" spends over € 7 million a year on research, care and quality of life of patients.

As you point out additional funds might be useful:
- Public funds for CF centres to have greater resources to meet an increasing number of adults and older patients .
- And also grants specific to address the specific needs of adult patients and those related to the transplant.
We advocate for these means for hospital and public financial assistance.
- Finally we would need private funds from public donations and partnerships with pharmaceutical companies to fund clinical trials, which are inherently expensive, on promising compounds.

In conclusion, an additional public investment is indeed now essential to ensure that patients are treated in accordance with the best standards of care and we advocate for it.

On the research side, we are now able to fund quality basic research. While some promising clinical trials have been recently developed, the challenge ahead will be able to finance future studies. The cost of developing these future drugs is considerable and will require mobilization at national and international level.

Muriel Papin, Franck Dufour and Sophie Ravilly
Association "Vaincre la Mucoviscidose"

14.02.2012