A Very Personal Advocacy Story

I got into advocacy to work for the common good of all people with cystic fibrosis. Little did I know that this work would help me in a very personal way.

| 4 min read
Noreen Tarletsky

For a long time, we have used the antibiotic amikacin to treat my son's Mycobacterium abscessus. It's not a fancy, specialty drug, but for more than a dozen years, it has been our most consistent option despite the detrimental side effect of hearing loss.

As a teacher, I am incredibly fortunate that New Jersey offers strong employee benefits, and I am beyond grateful to participate in my family's health coverage. Though not long ago, my insurance provider changed; a change that landed my family in a transition of care for health care providers and prescription care. Simultaneously, my son's intravenous (IV) amikacin therapy was terminated because of hearing loss. His inhaled therapy would continue. Because it was inhaled and did not go directly to his blood stream, the side effects would be less severe, and this $10-a-month vial would continue to keep my child out of the hospital -- a win-win in my book!

My new insurance provider took issue with the drug, and not only denied coverage but told us that if we chose to deviate from the IV version to the inhaled version, the cost would also skyrocket to $2,500 per month!

Ten years of advocacy work with the Cystic Fibrosis Foundation has enabled us to tell our story, and we have been inspired hearing the stories of others. It has also provided me with the opportunity to foster ongoing relationships within the offices of my elected officials. Just such a rapport was my saving grace in our battle for access to care.


After nearly three months of contact with my human resources department, phone calls, letters, emails, and multiple appeals to the insurance company, I found myself on a conference call. Supported by my son's nurse and a member of the Compass team, we attempted to once again have my son's inhaled antibiotic approved. Filled with frustration and perhaps a bit of confusion, the insurance agent surprisingly hung up on the conference call. Stunned and bewildered, it was then that I learned the true meaning of a strong rapport -- a relationship.

At my wits end, I fell back on my advocacy training. Late on a Friday when I felt like I had nowhere to turn, I reached out to my U.S. Senator's office. I sent an email to a member of the senator's staff, someone with whom I had met previously while advocating on behalf of people with CF. In an email, I detailed the issue of our need for access to affordable, adequate, and accessible care -- as well as my attempts to solve the problem on my own. To my surprise, within 15 minutes I had a response, and within 20 minutes, he had a plan. Shortly after that, the plan came to fruition when the amikacin was approved, thus restoring the care needed to treat my child.

Recently, it was my pleasure to once again participate in March on the Hill. The senator's office was not on my schedule, but since the agenda had my group close by, we stopped by his office. Understanding that the staffers are incredibly busy, I gently asked if the staffer who had assisted me was available for just a two-minute thank you. Advocacy and access to care can take a variety of paths, but it was never more direct than when he walked into the senator's lobby, hugged me, and with sincere compassion asked, “How is your son?”

I became involved with advocacy to help all people with CF. But advocacy helped me forge the relationships that helped me get the medication my son needed. It goes without saying, I will be forever grateful to the senator and his staff for the casework services that helped resolve my son's insurance issues. However, I am equally indebted to the Cystic Fibrosis Foundation for providing the opportunity for me to use my voice, to speak out on behalf of my child, and to tell the story of cystic fibrosis to not only my elected officials, but to all who will listen. Until it's done!

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Noreen is mother to her son, Alex, who was born with cystic fibrosis. As a graduate of Marywood and Wilkes Universities in Pennsylvania, Noreen is a fifth grade language arts teacher in New Jersey. She served as the state advocate chair for the Greater New Jersey Chapter of the CF Foundation for eight years, is a member of the Northeast Pennsylvania Chapter Board of Directors, and is a team leader for Alex's Athletes, a national family Great Strides team. Noreen lives in New Jersey with her husband, Chris, her daughter, Eva and her son, Alex. Follow @nortar1163 on Twitter.

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