Three Ways CF Helps Me in My Career

Guest blog by: Reid D’Amico

Living with CF is hard. As I’ve gotten older, I’ve learned to pivot with many of CF’s new challenges. This has largely been an iterative process of successes and failures with plenty of feedback, patience, and assistance from friends and family. However, I’d like to focus on a few elements of CF that I believe have augmented my professionalism. These are elements that have taken time to develop, and are still being developed, but I believe that CF has provided a solid foundation for this professional growth. Continue reading Three Ways CF Helps Me in My Career

List of CF Patient Assistance Programs

Patient Assistance Programs

AbbVie 
CREON® CFCareForward Patient Support Program offers nutritional services to eligible patients, as well as financial and educational support for patients and families.
http://www.creon.com/CFCareForward
1-855-227-3493

Chiesi USA 
Chiesi USA offers prescription access support, financial assitance, and product counseling for patients taking BETHKIS® (Tobramycin Inhalation Solution) and PERTZYE® (pancrelipase) 
ttp://bethkis.com/support-services/
http://www.pertzyecf.com/patient/free-support-and-savings/r
1-888-865-1222

Genentech, Inc.
Genentech Access Solutions 
http://www.genentechaccesssolutions.com/portal/site/AS/
1-866-4-ACCESS
Pulmozyme® Access Solutions Co-Pay Card Program 
https://www.activatethecard.com/pulmozyme/welcome.html
1-877-794-8723

Gilead
Cayston® Access Program
http://www.gilead.com/responsibility/us-patient-access/cayston%20access%20program
1-877-722-9786

Novartis Pharmaceuticals
Patient Assistance Now (Spanish Speaking Services) 
http://www.pharma.us.novartis.com/info/patient-assistance/patient-assistance.jsp?usertrack.filter_applied=true&NovaId=2935377019348182802
1-800-245-5356

Vertex Pharmaceuticals
Vertex GPS: Guidance & Patient Support (Kalydeco® or ORKAMBI™)
http://www.vertexgps.com/
1-877-752-5933

RespirTech
Customer financial assistance program for patients using inCourage® airway clearance therapy.
http://www.respirtech.com/reimbursement-incourage-airway-clearance-therapy/patient-financial-resources
1-800-793-1261

Live 2 Thrive 
Live 2 Thrive Offers copay assistance, free vitamins and supplements, and nutritional information for eligible patients. 
https://www.live2thrive.org/
1-888-936-7371

OTHER RESOURCES

Foundation Care 
List of company assistance programs 
http://www.foundcare.com/fc-patients/reimbursement-help/

Cystic Fibrosis Patient Assistance Foundation
Assistance for affording medications and devices for managing CF
https://www.pparx.org/prescription_assistance_programs/cystic_fibrosis_patient_assistance_foundation

Cystic Fibrosis Services
Additional patient assistance programs for those without insurance coverage 
http://www.walgreens.com/topic/pharmacy/cystic-fibrosis-services.jsp

Boomer Esiason Foundation
Links to assistance programs for Tobradex, Creon, Aceon, Estratest HS, Prometrium, EstroGel, Pulmozyme, Advair, and Cipro
http://www.esiason.org/what-is-cf/resources/patient-assitance

HospitalBillHelp.org 
Guidance for Californians facing hefty hospital bills 
http://www.hospitalbillhelp.org

NeedyMeds.org 
Additional Patient Assistance Programs
http://www.needymeds.org

Partnership for Prescription Assistance
Database of Patient Assistance Programs
(Search by drug, company or program name) 

http://www.pparx.org/prescription_assistance_programs/list_of_participating_programs

Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.
http://www.patientadvocate.org/

Deadline to Enroll in a 2018 Marketplace Plan Ends Friday December 15th!!

The deadline to enroll in a 2018 Marketplace health insurance plan is Friday, December 15, 2017.  A person can visit www.HealthCare.gov to create an account and review options for coverage.  Then the person can apply for coverage for  2018.  All plans on the government Marketplace offer essential benefits, such as emergency room visits and prescription drug coverage, as well as preventive care including shots and screenings.  The plans offered are run by private insurance companies.  Many states have a variety of plans available.
Some people in the CF community think that the Affordable Care Act has been repealed.  This NOT true.  The Affordable Care Act is still the law of the land.
This means that some people with CF may be eligible for premium help when purchasing a policy on the Marketplace.  The household income cut off is much higher than the cut off for Medicaid which means many people with CF may be eligible for help paying their premiums if their plan is purchased through the Marketplace.
 Some states run their own Marketplaces.  When a person goes to www.Healthcare.gov the site will link them to their state marketplace if the state has their own marketplace.
In some cases the premium help that is available is higher than the help that has been available in prior years.
The only way to enroll in a health plan through the Marketplace after December 15, 2017 is if you qualify for a Special Enrollment Period.  A person qualifies for a Special Enrollment Period if the person has certain life events occur such as losing health coverage, moving, having a change in income, getting married or having a change in family size.
If a person with CF is without health insurance coverage or wants to see if a better more affordable option is available then he or she should go to www.Healthcare.gov to see what is available before time runs out.

This is how Trumpcare will be a death sentence

Originally published 6/28 on Think Progress by Ian Millhiser
https://thinkprogress.org/jonathan-trumpcare-b02947f9a9c5

Originally publishedStripping health care from millions of people has consequences.

Jonathan Miller with his mother and sister. CREDIT: Courtesy of Jonathan Miller

Continue reading This is how Trumpcare will be a death sentence

Defining Barriers to Treatment for Patients With CF

The Cystic Fibrosis Engagement Network, a project of the Alliance for Patient Access, released a new white paper, “Making Treatment Accessible for Cystic Fibrosis Patients.” The white paper details what’s standing in the way of patient access to new treatments approved to target some of the genetic mutations that cause Cystic Fibrosis – and how addressing bureaucratic barriers could help the 30,000 Americans living with this rare disease. For the patients with specific mutations, these treatments can significantly improve lung function and quality of life.

Continue reading Defining Barriers to Treatment for Patients With CF

You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

RARE LUNG DISEASES PATIENT EDUCATION DAY ON CYSTIC FIBROSIS, CHILDREN’S INTERSTITIAL LUNG DISEASE AND PRIMARY CILIARY DYSKINESIA

REGISTER NOW AT:
https://attendee.gotowebinar.com/register/6993341835513746691

This event is co-sponsored by the American Thoracic Society, the Cystic Fibrosis Foundation, the Children’s Interstitial Lung Disease Foundation and the Primary Continue reading You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

Tell Congress to Oppose the American Health Care Act

The House of Representatives will soon vote on legislation that would jeopardize access to affordable and adequate health care coverage for people with cystic fibrosis.

The bills would effectively eliminate Medicaid expansion and alter Medicaid’s funding structure in a way that would reduce access to care Continue reading Tell Congress to Oppose the American Health Care Act