Grubbs-headshot1497372210
AdvocacyFinancialLiving With CF

Equal Access to Treatment for All with Cystic Fibrosis in the US?

Just in from Tamika Grubbs: Cystic Fibrosis is the same disease for at least 30,000 people in the united states and approximately 70,000 worldwide, but depending on where you reside and what insurance you have there could be big differences in your access and quality of care. I am a …

READ MORE →
VitaminD_patch2
FinancialResourcesTreatments

D3forME Transdermal Vitamin D Patch: do you qualify?

Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic Fibrosis Patient Assistance Program. Written by Tamika Grubbs, CF nurse consultant D3forMe proudly announces participation in Healthwell’s Cystic Fibrosis Patient Assistance Program. The D3forME Transdermal Patch is for patients who can’t absorb enough …

READ MORE →
AbbVie
FinancialLiving With CFResourcesSupport

AbbVie scholarship for students with cystic fibrosis

Thanks to 25-years of medical advancement, the goal of pursuing higher education for many students with cystic fibrosis, an inherited chronic disease that affects the lungs and digestive system, is more achievable than ever before. AbbVie announced the opening of the application period for the AbbVie CF Scholarship program, marking …

READ MORE →
Miracle_Flights4
FinancialLiving With CFResourcesSupportTransplantsTreatments

Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment

Struggling to cover the cost of air travel to receive your medical care? Miracle Flights assists patients through free commercial air travel to obtain special medical care. Read more about this fantastic organization and how to apply below…   Blog article written in conjunction with Brooke Freeman, Community Outreach Officer …

READ MORE →
legislation
AdvocacyFinancialLiving With CFResources

Make Friends with your Legislators! Tell them about Cystic Fibrosis.

Especially for Cystic Fibrosis, how the government acts on the Accountable Care Act  (ObamaCare) does make a difference! Since Healthcare was such a big issue in the last election: Keep in touch with your legislators…YOU HIRED THEM!  They need to hear from YOU! Make them your FRIENDS! Congress: Find your …

READ MORE →
vertex
FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment Drugs

In October, Oklahoma-based journalist and mom Juliana Keeping traveled to Boston with her son to confront Jeffrey Leiden, the CEO of Vertex Pharmaceuticals. Keeping’s son, Eli, has cystic fibrosis, and she’s not happy that Vertex’s two-drug combo, Orkambi, costs $259,000 a year. So Keeping, who gathered more than 124,700 signatures on …

READ MORE →
2016-09-14-15-04-12
FinancialLiving With CFTreatments

How Much Do Orphan Drugs Cost?

The high cost of CFTR correctors and potentiators has been in the news since the drugs were approved by the FDA. Many people have been concerned that private insurers and the government might deny coverage based on the cost. However, recent research into healthcare spending indicates that the overall impact …

READ MORE →
patient assistance controversy
AdvocacyFinancialLiving With CFTreatments

Understanding Pharma Controversies in the News

Many people have heard of the company, Turing Pharmaceuticals, which last year raised the price of a drug by over 5,000%, but most people don’t understand how and why that was possible. Looking at the issues behind the Turing Pharmaceutical controversy of this past year is worthwhile even though the …

READ MORE →
Screenshot_2016-04-20-21-35-38-1-1
FinancialLiving With CFResourcesSupport

Individual Counseling Offered

jricci brings us this great news: Through a very generous contribution Financial Support for Individual Counseling Services are being offered to the CF Community! Read More: CFQoL_Counseling_Flyer_2016

READ MORE →
smiles
FAQsFinancialLiving With CFSupport

Social Security Disability Benefits for people with Cystic Fibrosis

Introducing Deanna Power, the Director of Community Outreach for Social Security Disability Help. She wrote this article for our community at CysticFibrosis.com to help shed light on the subject of applying for disability benefits.   Applying for Disability Benefits with Cystic Fibrosis     by Deanna Power   Cystic fibrosis …

READ MORE →