North Bellmore teen advocates for cystic fibrosis patients

Upon entering the office of U.S. Rep. Kathleen Rice, Julianna Brogan said she was amazed that the congresswoman recognized her.

“How’s Jake doing?” Rice, a Democrat from Garden City, asked the Mepham High School senior, referring to her friend Jake Genova, 18, of Garden City.

When Genova was 3 years old, he was diagnosed with the respiratory and digestive disease cystic fibrosis. For more than a decade, Brogan and her family have been fundraising and advocating for the Cystic Fibrosis Foundation in honor of him.

Brogan was chosen, along with Genova’s brother Max, 15, to take part in the Cystic Fibrosis Foundation's ninth annual Teen Advocacy Day in Washington, D.C., from June 20 to 22.

The youth advocates joined 200 others with family members or friends suffering from cystic fibrosis to speak with their state’s senators and representatives to make sure that those living with the disease are represented in Congress.

Brogan and Max also participated last year, asking for increased funding for the National Institutes of Health and the Food and Drug Administration, both of which finance the CFF. They also introduced lawmakers to the Cystic Fibrosis Caucus and urged them to join in raising awareness of the disease. Rice was soon on board.

Brogan’s father, John Paul, applauded the work that the CFF has done, including the creation of new medications and forms of treatment. When Genova was diagnosed, the life expectancy of those living with cystic fibrosis was 19 years. Now, as he is nearing that age, the life expectancy has increased to 40 years.

Brogan said that most of the six lawmakers she met with did not know much about cystic fibrosis and needed to have the disease explained to them. “I never knew what it was before Jake was diagnosed,” said John Paul, to which Brogan interjected, “I’ve known about it for as long as I can remember.”

Before making any requests to lawmakers, Brogan and Max spoke with them about Genova. Every morning he wears a special vest that vibrates his chest to break up the mucus in his lungs. He also uses a nebulizer every day and takes digestive enzymes before every meal.

Brogan said that Genova could not attend the advocacy event because of the health risks associated with having two people with the disease in a room at the same time. This, she added, is why it is important for those living with the disease to have advocates.

After Genova’s diagnosis in 2003, his mother and Julianna’s godmother, Danielle, created Jake’s Team, a support group partnered with the CFF. Jake’s Team, comprising family members and friends, took part in the organization’s annual Great Strides Walk starting that year and has been involved ever since.

Danielle is also involved in the Welcoming Club of Garden City, which made cystic fibrosis its philanthropic cause in 2007. That, Danielle said, inspired her to hold more fundraisers with Jake’s Team. Over 15 years, Jake’s Team has raised more than $800,000 to fight the disease.

Last year’s Teen Advocacy Day inspired Brogan, but she said that the stakes were raised this year because of the current state of American health care reform. During the advocates’ visit to the capital, the Senate was amending the American Health Care Act to create the Better Care Reconciliation Act, which advocates feared might endanger access to care for those with cystic fibrosis.

The teens urged lawmakers to consider those living with the disease before supporting the proposed health care act, imploring them to protect coverage for people with pre-existing conditions like cystic fibrosis, refute lifetime or annual coverage caps, and support Medicaid by retaining expanded eligibility and ensuring adequate funding.

Brogan is quick to point out that Medicaid provides coverage to half of the children and one-third of the adults with cystic fibrosis. She added that she could not imagine a world in which her friend did not have access to the life-saving treatments that he so desperately needs.

“Jake is my best friend, and all I want is for us to grow up together — to grow old together,” she said. “I want him to be healthy, and I want us to find a cure.”

Genova graduated from Garden City High School in May and will attend Florida Institute of Technology in the fall. Jake’s Team continues to raise funds for the CFF and is aiming to break a goal of raising $1 million.