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 I started to explain that if there are no changes in who is serving in Congress, the Affordable Care Act will be repealed in 2019.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If the Affordable Care Act is repealed it will become impossible for large numbers of people with CF to access the health insurance policies or government programs we need to pay for our care and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.

Giving Tuesday 2018

Hello CF Roundtable Subscriber,

With the holidays upon us, please consider donating to CF Roundtable on Giving Tuesday, November 27th, a national day of giving.

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information, and resources through CF Roundtable.

Because of you:

  • All of our readers receive CF Roundtable free and have access to the latest research, legal and critical knowledge that has maximized their medical care.
  • CF Roundtable can support scholarships for students with CF striving for higher education.
  • Our Speakers Bureau presenters (who are all adults with CF) can speak at your next CF event and spread education and support about CF to other adults with CF, health care personnel, family and/or friends.
  • We can continue all of this and more!

CF Roundtable is run by an amazing board of directors who are all adults with CF. Our time is 100% voluntary. Together, we create the CF Roundtable publication, website and numerous programs for you and our vital CF community.

We hope to count on your support this year. Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com and donate!

Contact us at cfroundtable@usacfa.org anytime.

Thank you for being a subscriber and Happy Holidays!

Cystic Fibrosis Podcast 192 Emily’s Entourage

In the latest Cystic Fibrosis Podcast, Jerry speaks with Emily Kramer-Golinkoff about the role of a patient advocate organization in driving drug development in rare disease.
Emily, a 33-year-old who has a nonsense mutation of CF, is a co-founder of Emily’s Entourage, a 501 3(c) that’s goal is to accelerate research for new treatments and a cure for CF. She is an internationally recognized patient advocate and speaker, has a Master’s degree in Bioethics and is certified in Clinical Ethics Mediation, was named “Champion of Change” by President Obama’s Precision Medicine Initiative, and has been featured by CNN.com, Time.com, AOL.com, People.com, and more for her work with her charity.

Continue reading Cystic Fibrosis Podcast 192 Emily’s Entourage

The Hospital Comfort Kit Is Now Available!

The Hospital Comfort Kit Is Now Available!

When Rebecca Poole was admitted to the hospital in December 2014, she had no idea that she would not be discharged for 219 days. Her husband Ray focused daily on what he could do to make her more comfortable. Friends and family would ask what they could do to help and at the time he didn’t have an Continue reading The Hospital Comfort Kit Is Now Available!

Broadway’s biggest stars come together to raise money for Cystic Fibrosis

What do you get when Broadway’s biggest stars, such as Javier Muñoz and Gideon Glick, come together in the recording studio? One heck of a song. And one heck of a message.

Joined by Broadway veterans Laura Osnes, Christy Altomare and actress Sarah Levy, Muñoz and Glick have banded together for a new campaign — called the “Anyway” campaign — for an original song to help raise money for Emily’s Entourage.

At the center of the Entourage is Emily Kramer-Golinkoff: a 33-year-old daughter, sister and granddaughter who was diagnosed with Cystic Fibrosis when she was just a few weeks old. Her parents, Liza and Michael, have done everything in their power to raise Emily as if she was a normal child.

As the fatal disease only affects 70,000 people worldwide, funding for a cure is limited. Emily and her family are even more restrained by her specific mutation, which means medical funding is even rarer. And with a life expectancy of only 35-37 years for her kind of CF, time’s ticking.

Six years after the Kramer-Golinkoffs decided to take matters into their own hands, they’ve raised $3 million to drive high-impact research and speed up breakthroughs to research not only Emily’s mutation, but many other diseases including muscular dystrophy, inherited blood disorders and certain cancers.

They’ve also built a network of family, friends, and strangers from around the world, all of whom have been welcomed into the Entourage. Each Entourage member has been more inspired by Emily’s story than the next.

Take Elizabeth Phillipson-Weiner, from Emily’s hometown of Philadelphia, Pennsylvania and composer of “Anyway.” She took a simple journal entry from a songwriting retreat, turning lyrics like “when the going gets tough I ask questions” into a prolific melody.

Elizabeth explained to AOL Lifestyle. “The song wasn’t just cathartic for me, but could actually ring true for a lot of other people. I immediately thought of Emily.” Working with co-writers, producers and engineers, that melody was soon turned into a demo.

But as inspired as Elizabeth was by Emily’s story, the Entourage required “star power” to bring this project alive.

“I cold contacted agents and managers, I asked friends and friends of friends and friends of friends of friends,” said Elizabeth. “We did hear ‘no’ quite a bit, but whenever I became discouraged or frustrated I thought about who and what I was doing this for.”

This story was originally published on AOL.com

Vertex Employees Donate $1M to CF and Other Communities via Matching Gift Program

By Carolina Henriques

Vertex Pharmaceuticals employees have raised more million $1 million  using  the Vertex Foundation‘s matching gift program in a show of commitment to causes that include the cystic fibrosis (CF) community, a company press release states.

The dollar-for-dollar matching gift program is being run through the nonprofit Vertex Foundation, established by the company in November 2017 as part of it’s charitable giving goal of donating $500 million to qualified nonprofits and other causes worldwide over 10 years.

To date, more than 500 Vertex employees have used the program to support 753 charities around the globe working to advance work in areas that include healthcare, human services, education, and disaster relief.

Vertex’s charitable commitment has four primary goals: supporting CF patients and caregivers worldwide, including enabling access to Vertex’s medicines; helping underserved students and young women with STEAM (science, technology, engineering, arts and math) education; supporting young doctors and scientists; and strengthening and fostering innovation in local communities through health and wellness programs.

“Giving back is in our DNA at Vertex, and our employees have a long history of going the extra mile to improve the lives of patients, students and their neighbors,” Jeffrey Leiden, president, chairman and chief executive officer of Vertex, said in the release. “I’m proud that The Vertex Foundation is able to help extend the impact of our employees’ giving and look forward to seeing the reach of these investments in the causes they care about most.”

Also as part of its 10-year commitment, Vertex awarded $400,000 in scholarships to eligible CF patients and their family members in May as part of its second “All in for CF” scholarship program. In total, 80 scholarships worth $5,000 each were awarded for the upcoming academic year.

Vertex, which specializes in cystic fibrosis, has three approved CF therapies: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor).

The company is also testing potential triple combination treatments for CF.

For the rest of this article, click here.

Jerry Cahill’s CF Podcast: The Pre-Transplant Process with Dr. Emily DiMango

The latest video in The Path Forward with Cystic Fibrosis series, Dr. Emily DiMango, Director of the Gunnar Esiason Adult CF Program at Columbia University Medical Center, discusses the lung transplant process through the lens of a CF doctor.

First, she reviews the importance of CF patients participating in drug trials in order to start life-changing medications sooner. She then answers the following questions:

· What does pre-transplant management look like for a CF patient?
· When is the right time to be referred to the list?
· What is the referral process like?

Finally, she reiterates the importance of well-rounded treatment that includes physical health, nutritional health, and emotional health.

This video was originally posted on JerryCahill.com

Cystic Fibrosis Awareness: Sharing A Story & The Facts

Cystic fibrosis is a devastating disease. About 30,000 children and adults have cystic fibrosis (CF) in The United States. While the life expectancy for someone with CF has doubled in the last 30 years, children and adults people still lose their lives to this disease every day. There is no cure yet. It’s time to find it.

How can you help? Use your voice and get involved! Participate in Great Strides walks and other events supporting CF and share the facts on social media and in your community. The Cystic Fibrosis Foundation is working hard to find a cure. Other foundations and organizations help the CF community as well. Like the CF Roundtable which supports adults with CF, there is a foundation that supports children and families living with CF: Claire’s Place Foundation.

Claire’s Place Foundation, founded by Claire Wineland, when she was just 14 years old, is a 501c3 non-profit organization designed to help children and families affected by cystic fibrosis. Claire was born with CF. In her short life, Claire has undergone more than 20 surgeries and has spent months at a time in the hospital.  She survived months in a coma on mechanical ventilation despite the odds and was also a Make-a-Wish recipient. She has 40% of ideal lung function and the doctors have estimated two years left to live. This is not, however, what characterizes or defines her. Claire has dedicated her life work to making a difference in the lives of others living with CF.

Now 21 years old as an adult living with CF, Claire’s Place Foundation is a way for Claire to give back with hope, strength, and joy.  She wants to live with intention and purpose. In her own words, “I know my life will be shorter so every day has meaning.”  She strives to find new ways to help the CF community and other children afflicted with chronic illness. Claire’s Place is making a huge impact through its two programs – The Extended Hospital Stay Fund and the Family Support Program.  These programs are in high demand and the foundation needs your donations to continue assisting young patients in need. You can meet Claire and support her foundation at her next fundraiser, “Glow Ride,” on August 18, 2018 in Hermosa Beach, CA.

To find others ways you can help bring awareness to CF find a local chapter near you.

Get involved. Donate. Come to events.

Lessons Learned Through Parenting and CF

Guest Blog By Jeannine Ricci

Back in 2001, when I became a mother, resources on parenting
with CF were practically nonexistent. Thanks to all of the
research advancements, it’s so exciting to now see more and
more people with CF exploring the possibility of parenthood.
Because this topic is becoming more prevalent, I thought it might
be a good time to resurrect an article that I wrote 5 years ago. It
discusses my experience with talking with my children about CF
and the possibility of a shortened life expectancy. Hopefully it will
help other parents as they face this challenging subject.
At the end of the article, I give an update on my daughters
and how their experience with my CF continues to impact their
lives.

***Lessons Learned- Parenting with CF***

My CF has shaped my children’s lives for as long as they can
remember. As toddlers, they developed patience. After many
temper tantrums, they eventually learned that I had to finish my
treatments before we embarked on our day’s adventures. As
preschoolers they learned empathy. They would run to get me
tissues and water if I was having a coughing fit. Their teachers
would comment on the level of empathy they showed their
classmates and how unusual it was at such a young age. During
their school years, they are learning to become more
independent. Just last week, my older daughter surprised me by
making their lunches and helping her sister with her homework
because she knew I was not feeling well.

Since CF had been woven into their everyday lives, I took their
comfort level with my CF for granted. They knew that CF meant
coughing, treatments, and IVs. What they did not know was that
it is a life-threatening disease. I regret having not broached this
subject with them as soon as I felt they were mature enough to
handle this information. Last year my daughter’s teacher called
to tell me that he was concerned about her. She was not herself
at school. She was very distracted and seemed depressed. I
knew immediately what was bothering her. I was on IVs because
of an especially difficult exacerbation. The side effects of the
antibiotics left me on the couch most of the day. It was the
sickest she had ever seen me. We had a long discussion after the
phone call and she opened up to me and told me how she had
read something at the CF walk that stated that the life
expectancy of someone with CF was 37 years old. I was 40. It
truly broke my heart to know that I was not there to answer her
questions and ease her fears when she read this critical piece of
information. She deserved to hear this from me. As I spoke to
her, I tried to give her realistic but hopeful answers. I told her
that I wanted nothing more than to watch her and her sister
grow up and that I hoped to be there for her college graduation,
her wedding, and the birth of her children. I explained that there
are so many new medicines being discovered that would help to
make this a possibility, but I also told her that there are no
guarantees, and that is why I try so hard to keep myself as
healthy as possible.

Just as my children have always incorporated important life
lessons from my illness into their lives, I believe that this
discussion will only further strengthen their character. It will
teach them the value of treating every day as a gift. I hope my
experience encourages other parents with CF to be prepared to
have this pivotal discussion with their children. No matter how
difficult it may seem, it will be worth the peace of mind knowing
that you will be the one delivering this information, ready to help
them cope with their fears.

Here are some guidelines from Lisa C. Greene, a mom of two
children with CF and co-author with Foster Cline, M.D. of the book
Parenting Children with Health Issues (www.PCWHI.com)

• Pivotal parenting moments can take us by surprise, so be
prepared ahead of time. Our answers should be honest, calm,
matter-of-fact, and hopeful. We shouldn’t use terms like “fatal”
or “life-shortening” nor should we make empty promises. Use
terms like “healthier” rather than “healthy,” “more likely to live a
long time” rather than “will live a long time.”

• We need to try our best not to let our own fears and worries
show, both in our words and in our body language. Children pick
up on (and tend to mirror) their parents’ emotional cues,
especially when they are young. If you are having trouble
controlling your own emotions about these tough issues,
counseling might be helpful.

• At some point, we do need to address the issue of life
expectancy. Hopefully, this will be clarified by around the age of
eight (around 3rd grade) depending on the maturity of your
child. One way to address this issue is to ask your child questions
to open up dialogue. Some examples are:
“How much do you know about CF?”
“How are you handling it?”
“Is there anything about CF that worries you?”

With a little awareness and preparation, you can make talking
about these difficult issues a positive experience. Relationships
can grow closer when people go through tough times together.

Update: 5 Years Later
It’s no surprise that this disease has continued to shape my
daughters’ lives over the past 5 years. There’s no denying that my CF, anxiety, and depression have caused many hardships for my family. And it’s
difficult not get swallowed up in the guilt of knowing that there
are times that I’m not able to be the mom that I desire to be, the
mom that they deserve. During these times, I try my best to
focus on the positive ways CF has touched their lives.

The attributes of fortitude and courage were fostered as they
watched my battle with CF progression as it inched its way closer
and closer to the center of my life–our lives–demanding more
attention. And then, in November of 2014, they witnessed hope
being transformed into tangible reality as I swallowed my first
dose of Kalydeco. This new reality has allowed them to more
confidently envision me by their sides in the distant future. They
have embraced this gift with a deep sense of gratitude that can
only be felt when someone has experienced the threat of the
unbearable alternative.

They have watched as this same gratitude has fueled my desire
to help others who are still waiting for their miracle. At the young
ages of 15 and 17, they possess a keen understanding of the
intrinsic value in every life, and that the amount of money in
someone’s bank account or what type of insurance they have
should not be dictating access to these life-saving medications.

They have learned the importance of taking action and
advocating for others, even if your voice is seemingly
overpowered by others. They have both participated in the Cystic
Fibrosis Foundation’s Teen Advocacy Days in Washington D.C.
the last few years, meeting with members of Congress and
stressing the importance of ensuring adequate healthcare
coverage for all. They recognize the gifts both given and received when you touch a person’s life indelibly and both of my daughters have expressed an interest in pursuing a career in the healthcare field. 

I’m so proud of them as I watch them develop into
compassionate, strong, young women, inspired to make their
mark on this world; a mark that undoubtedly would not be so
deep and impactful if it wasn’t for the valuable life lessons they
have gleaned from having someone they love with CF.

SIX Ways to PAY IT FORWARD to CF ROUNDTABLE!

By Jeanie Hanley, President

Greetings CF Roundtable Subscriber!

May is CF Awareness month. What better way to “Pay It Forward” than by supporting CF Roundtable which has been vital to the CF community! Please consider making a tax-deductible donation today.

This is YOUR CF Roundtable and because of your generosity, YOU have made it possible for nearly 30 years. 100% of your donation goes into the newsletter and many outreach programs. All work is done by volunteers with CF like Andrea, our Executive Editor, whose inspirational words regarding her 18 years of transplant are below:

Eighteen Years of Life Post-Transplant

By Andrea Eisenman, Executive Editor of CF Roundtable

Reflecting back on my life for the last 18 years post-transplant, I am amazed I have lived so long. Way longer than I expected, considering the 50 percent median survival of 5 years after a bilateral lung transplant. I am grateful for this time in which I was able to get married, go back to school for various interests like film and cooking, and care for my mom in her later years, share my life with people I care about and never in recent memory felt this good.

While I have enjoyed a good quality of life, it came with a price of total compliance almost to the point of being neurotic at times (my doctors probably get sick of my calls and emails), a daily exercise regimen and lots of rest. But I found that if I did things I enjoyed like tennis, pickle ball or swimming, it helped get the exercise for that day done while it was fun and social.

I have been extremely fortunate as not only do I have this longevity with transplant and I feel pretty well. Aside from the last 12 months, I have had the ability to travel and do most things my peers do. While I had some setbacks recently, I am starting to feel better. I keep a positive outlook and do what is needed. I can see how precious this gift of life is and I hope that when my time comes to be a donor, the person who gets my organs enjoys them as much as I enjoyed these lungs.

DONATE LIFE!

Please consider Paying It Forward in these six ways:

 

  • Unrestricted Gifts – your contribution will go to the program that needs it most.
  • Milestone Celebration: for a transplant anniversary, birth of a child, wedding, or a birthday. There is no greater reward than celebrating YOU and YOUR accomplishments.
  • Tribute Gifts – donate in honor or in memory of someone.  
  • USACFA Endowment Fund – consider contributing which will get CF Roundtable closer to be self-sustaining forever! Please contact us if you are able to contribute.
  • Matching Gifts – if your employer has this program, then let us know!
  • Bequest – A simple and easy way to remember CF Roundtable in your estate planning.  To establish a bequest, please contact us.

 

To make a donation, click here DONATE NOW!

Or MAIL a check USACFA

(made out to USACFA) to:

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Contact us at cfroundtable@usacfa.org for any further assistance.

USACFA proudly publishes CF Roundtable and all its associated programs; USACFA is a 501(c)(3) nonprofit organization. All donations are tax-deductible.

Thank you!