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CALLING ALL ADULT PATIENTS

 

The Cystic Fibrosis Foundation is launching the Adult Guide to Cystic Fibrosis, a new online educational resource written just for adults with CF. The Adult Guide covers a range of topics including the basics of lung care, male infertility, pregnancy, menopause, parenting as an adult with CF, and traveling with CF.

To help the CF Foundation improve the information in the guide, they welcome your feedback by completing a short survey.


You can download your copy on CFF.org.

 

KALYDECO APPROVED FOR 23 MUTATIONS!!

 

This is very exciting news!

The FDA approved ivacaftor (Kalydeco®) for individuals ages 2 and older who have at least one of 23 residual function mutations in the CFTR gene. As a result, an additional 900 people with cystic fibrosis can now benefit from modulator therapies.
The approval of these 23 mutations was based on a combination of laboratory results that suggest the benefit of ivacaftor for these mutations, clinical trial data, and the drug's established safety record.
You can read more about this in the web story on cff.org, or in the press release issued by the FDA.


This news brings us one important step closer to ensuring that all people with CF have access to transformative therapies and, ultimately, a cure.

 

For more information or to ask if you might be eligible for Kalydeco, please call your CF center!

 

 

BIG NEWS FROM THE CF FOUNDATION

 

The CF Foundation and the Therapeutics Development Network sent out a press release on Wednesday, March 29 reporting the initial results of the most recent Phase 3 trial with Vx 661. This is another big step in treating the basic defect in CF. Click here to read more!

 

 

Welcome to Chinwe Izegbu, MSN, RN, APN-C

Chinwe Izegbu joined our CF Center on January 9, 2017.  She is a welcome addition to the pediatric and adult CF teams and now our second NP!  Chinwe got her MSN from UMDNJ and is currently pursuing her DNP from Rutgers University.  She started her career in inpatient telemetry and critical care.  She then moved on to UMDNJ in Newark as an ER nurse.  While working at UMDNJ, she got her MSN and APN. Most recently, she was a family medicine hospitalist with Robert Wood Johnson Medical Group at RWJUH. She comes to us with experience in chronic disease that lends itself well to Cystic Fibrosis care.  She has already met many of you and looks forward to building a relationship with all of our patients and families.  We are thrilled to have her on the team!

 

 

IMPORTANT UPDATE ON HEALTHCARE REFORM PROPOSALS

As many of you may know, House Republicans released the first drafts of their plans to repeal and replace the Affordable Care Act this week. The CF Foundation's analysis reveals the bills from the Energy & Commerce and Ways & Means Committees will significantly reduce coverage and consumer protections for people with CF.  

The Cystic Fibrosis Foundation has been engaged with House members and staff throughout this process making the needs of the community known. Earlier this week, we signed on with ten other high-profile patient organizations, signaling our core principles that health insurance should be affordable, accessible, and adequate. These principles align with ose set forth by the CF Foundation and form the lens through which we will evaluate all related legislation.

The CF community voice is stronger than ever. Just last week we held nearly 300 meetings with Congressional offices to discuss health care issues. We continue to need your voice. Next week the community at large will be asked to participate in a broad advocacy campaign to email and call their representatives in Congress. We hope you will join us to carry this message forward to your elected officials.
 

Please continue to stay up-to-date using the new section on cff.org about health reform

 

Click here    for the public notice from the CF Foundation

about the proposed healthcare reform

 

 

Other News

The Cystic Fibrosis Center has been bustling with activity over the last two years and we would like to share some of it with you!  We have applied for and received several grants to develop new programs or improve services.

  1. TDN Designation 2015 :Our center was approved as a site in the Therapeutics Development Network, part of the CF Foundation. This designation has provided us with access to current and future clinical trials as well as support for research coordinators to conduct these studies.  As a result, we have enrolled in several studies over the last two years.  Additional award money last year provided additional support for more nursing staff to help with research. This is very exciting for us and for you and we hope you will participate! For more information on clinical trials in CF, click here.                                  To find a trial near you, CLICK HERE 
  2. MHC GRANT: Our center received a grant beginning in January 2016 for a mental health coordinator to assist with coordination of services for patients and families.  As a result, our social worker, Erin McElroy Barker, is now full time and we are hiring a psychologist to work with patients and families in clinic.  We are excited about this new initiative from the CF Foundation. Please call Erin at 732-235-6409 with any questions.
  3. PHARMACY ASSISTANCE: We are excited to announce the latest addition to our center. Very soon we will be adding a pharmacist to our team to help us and you with medications.  Thanks to a grant from the CF Foundation, the pharmacist will be available during clinic hours to review medications, provide education, advise physicians on the best medications for you, etc. 

 

 

Click on Archives for previously posted news and updates.