Vote Like Your Life Depends On It! It Does.

By Beth Sufian, JD

Vote like your life depends on it Tuesday because if you have cystic fibrosis it does!

I did not think I needed to write an article about how important voting on November 6th is to people with CF, but last week I realized I was wrong.  I had discussions with some people with CF who did not understand the importance of the election to the CF community. I started to explain that if there are no changes in who is serving in Congress, the Affordable Care Act will be repealed in 2019.

We saw how close Congress came to repealing the Affordable Care Act (“ACA”) last year. Senator John McCain was our hero when he voted against the repeal of the ACA. Senator McCain lost his own battle with cancer this year and he will not be able to save us again. To be safe we need 3-4 new Senators and 23-26 new members of the House who will protect the ACA.

Everyone with CF and everyone who loves a person with CF should be spending the next two days getting out the vote for candidates who will protect our ability to access the care and the medication we need to fight CF.

If the Affordable Care Act is repealed it will become impossible for large numbers of people with CF to access the health insurance policies or government programs we need to pay for our care and the expensive medications that are improving the lives of children and adults with CF.  Last week we heard from the Republican majority leader Senator Mitch McConnell who said that in 2019 he pledged to repeal the Affordable Care Act, to both reduce the number of people who are eligible, and to restrict coverage under Medicaid and Medicare.

Many in the CF community mistakenly believe that the ACA does not apply to them because they have a private health insurance policy. The protections of the ACA apply to all private insurance policies. Here are just some protections the ACA provides to people with CF.

  1. The right to keep a parent’s health insurance coverage until a young adult turns 26.
  2. No lifetime caps on coverage.
  3. A maximum out of pocket amount.
  4. No pre-existing condition exclusions.
  5. 45 services that must be covered.
  6. The option for a state to expand Medicaid to low-income adults.

Without the ACA all of these provisions and many more protections go away.

Recent data show that at any given time at least 50 percent of children and adults with CF are enrolled in Medicaid.  Even if you have private health insurance, the loss of Medicaid by people with CF will still affect you. If 50 percent of our population does not have coverage for medication or treatment it will be impossible for companies and health care providers to deliver medications and treatment to the rest of us.  There will not be enough people who will be able to pay for care and medication. All people with CF will be negatively affected if the ACA is repealed.

If you have made other plans on November 6th I urge you to reschedule. There is no other event that should take precedence over the fate of health care for those with CF. We should all be coming together to make sure when we wake up on November 7th we know we did everything we could to protect the rights of people CF.

We ALL need to be getting out the vote on Tuesday. What does that mean? We need to be reaching out to friends and family members and explain why this election is so important to the CF community.

We need to reach out to campaigns who need our help block walking, phone banking and texting to get voters to the polls. We need to make sure everyone we know has a way to get to the polls. Many important races will be won by only a few votes. Every hour you spend getting out the vote now counts, there is no going back after the election is over.

This is the most important election of our lifetime.

Please join me in assuring that we have done everything we can for everyone in the CF community to continue to have the legal right to access insurance coverage. So many worked so hard to develop the excellent CF Care Center system. So many have spent their lives researching and discovering medications to help ease the burden CF places on us. Let us honor the memories of those who have lost their battle with CF by making sure we explain to friends and relatives why their vote on Tuesday is so important.

On Tuesday, I will be available all day to answer questions about the Affordable Care Act, Medicaid or Medicare coverage or to connect people to the information they may need to vote. Please call me at 1-800-622-0385 if I can help. I am acting as a private citizen on Tuesday and not as a member of any organization. I hope my next post will be of me dancing in the street late Tuesday night celebrating all of our efforts to make sure that everyone with CF has a bright future.

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.

CFF announces recipients of first annual impact grants

Cystic Fibrosis Foundation Announces Recipients of First Annual Impact Grants to Programs That Serve People With CF and Their Families

The Cystic Fibrosis Foundation has announced the recipients of its first annual Impact Grants.

The program provides funding to support people with cystic fibrosis who are creating unique projects in their communities that serve people with the disease and their families. Cystic fibrosis is a rare, genetic disease that causes chronic lung infections and premature death.

The 2016 grants award $10,000 each to seven diverse programs across the country — from one that teaches singing as an outlet for creativity and wellness, to others that provide personal fitness and health training to individuals with cystic fibrosis. Recipients were chosen by the CF Adult Advisory Council, an external panel comprised entirely of adults with the cystic fibrosis, in partnership with the CF Foundation.

“People with CF have the greatest insights about how to live with this disease,” said Drucy Borowitz, M.D., vice president of community partnerships at the CF Foundation. “We are honored to support these organizations that harness the power of the CF community to help people with this disease and their families live better lives every day.”

Read the blog here.

The grant award recipients include:
The Cystic Fibrosis Lifestyle Foundation (CFLF), a nonprofit organization that helps people with CF maintain a healthy lifestyle. The CFLF provides assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical wellbeing.

The United States Adult CF Association (USACFA), a nonprofit corporation run by adults with CF, offers the community an opportunity to exchange medical and nonmedical information through its quarterly national newsletter, CF Roundtable.

Project CF Spouse is a nonprofit organization dedicated to supporting spouses of people with CF. The grant will be used to grow the 150-person group, expand educational resources and facilitate connections between other spouses as they navigate their own CF journeys.

The sINgSPIRE program, through Breathe Bravely, will provide free, private voice lessons with a qualified voice instructor who will work on strengthening participants’ respiratory systems and improving self-awareness and confidence.

Program NuYou, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a workout plan that is tailored to individual participant’s needs.

Miles for Cystic Fibrosis supports Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath.

Continuing Education for Caregiver/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease.

Continue reading CFF announces recipients of first annual impact grants

BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.

By Beth Sufian, JD

Social Security has issued new rules regarding Social Security benefit medical eligibility criteria for people with CF.  The new rules will go into effect on October 7, 2016.  The following blog post is a summary of the changes and some important things people with CF should know about the changes. A more detailed Continue reading BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.

Costly Vertex Drug Is Denied, and Medicaid Patients Sue

Kalydeco, a $300,000-a-Year Cystic Fibrosis Treatment, Sparks Legal Battle in Arkansas and Shows Dilemma States Face

LITTLE ROCK, Ark.— Vertex Pharmaceuticals Inc. VRTX -0.72% ‘s $300,000-a-year cystic-fibrosis drug has sparked a legal battle here, where the state’s Medicaid program is restricting Continue reading Costly Vertex Drug Is Denied, and Medicaid Patients Sue

National Cystic Fibrosis Education Day Webinar December 7th, 2013

Join us for a Webinar on December 7
Please join us for a free webinar on cystic fibrosis to be held on Saturday, December 7, 2013 from 9:00 am to 1:00 pm MT (8:00 am PT/10:00 am CT/11:00 am ET). This event is being co-sponsored by the American Thoracic Society (ATS), the Cystic Fibrosis Foundation, Children’s Hospital Continue reading National Cystic Fibrosis Education Day Webinar December 7th, 2013