Florida has become the first state to create a local chapter of the Lung Transplant Foundation in a move that national leaders hope will set an example for 49 other states as the LTF raises awareness about lung transplantation across the country.
The newly formed Lung Transplant Foundation of Florida held a launch party in Miami last month to introduce the local philanthropic community to the LTF and its mission of improving the lives of lung transplant recipients. About 150 people attended the event, which was intended to build awareness and support for the LTF locally.
“I was humbled by the number of people who not only came out to our launch but by how appreciative they were to hear our stories and how eager they were to support our mission,” said the Lung Transplant Foundation of Florida’s vice president, Genevieve Guermont. “The success of the event has made me even more excited to be a part of the first year of the Florida chapter, and I am confident we will have a great impact raising awareness and funds leveraging local resources. “
Florida was a natural choice for the Foundation’s first state chapter: LTF President Jeff Goldstein lives in Miami and was a liaison between leaders in Florida and the national board of directors, headquartered in Raleigh, N.C. He will serve as president of both organizations.
“One of the things we’ve noticed is we’re getting people outside of our immediate community in Raleigh wanting to support the Lung Transplant Foundation,” Goldstein said. “The idea of establishing chapters throughout the country, hopefully connected to other transplant centers and transplant communities, is to broaden the connection to the lung transplant community. There are lung transplant recipients all over the country, and we are hoping to be a last stop on the highway that will pull people together and allow people to share their experiences.”
Goldstein has had two personal experiences that influenced his decision to pursue a chapter in his home state. First, his brother, who lived in Florida and was diagnosed with an end-stage lung disease, was told too late by his local pulmonologist that he needed a lung transplant. He died while undergoing the evaluation process at a renowned transplant center.
Second, Goldstein has a friend in Florida who needs a lung transplant to survive. But by the time his pulmonologist recommended a transplant, he was so weak that the idea of undergoing the evaluation and surgery was too overwhelming.
“These local pulmonologists are waiting to tell their patients already diagnosed with end-stage lung diseases that they’ll need a transplant,” said Goldstein, who had a lung transplant himself in 2003 and often counsels other patients about the process. “In roughly 75 to 85 percent of the cases of the people I’ve dealt with, including my brother, they were told too late, and nothing was really done. So part of our mission in Florida is to connect to the lung transplant community and to reach out to those patients who have been diagnosed with end-stage lung diseases to make them aware of the option of transplant, to try to demystify the process and make them understand what they need to do on behalf of their own healthcare.”
Understanding lung transplantation
Some people are not even aware that lung transplantation is an option. For others, the prospect of getting one is scary. When patients hear for the first time that they will need a transplant, they often search online for information, which can be clinical and discouraging.
“At some point, they’re told they need to be transplanted and that’s it. They go online and the information is daunting. The idea is scary, and people seem to be, in some cases, frozen, if you will,” Goldstein said.
“I see it all the time and get emails from people on Facebook saying, ‘I need a lung transplant. What do I do?’ What that tells me is that the localized pulmonology community isn’t fully aware of the process and isn’t addressing this appropriately. People with end-stage lung diseases need to be told up front, ‘You have an end-stage lung disease. We might be able to keep you stable for a while, but eventually, in order for you to live, you’re going to need a lung transplant.’
“I would suggest that you visit a lung transplant center immediately,” Goldstein added, “if nothing else than for an evaluation and a baseline. And then you could see them every six or eight months to determine when it is you might need to take the next steps in the lung transplant process. You could continue to see the local pulmonologist for your regular pulmonary function tests and medicines and anything else you might need. But I don’t think the pulmonology community is equipped to handle the unique requirements of an end-stage lung disease that will ultimately result in death or a lung transplant,” he added.
Florida will be a model
The need to educate patients and doctors about lung transplantation is not unique to Florida; it’s nationwide. Ask any patient who has been seen by lung transplant specialists either pre- or post-surgery, and most will tell you that at some point, they have had to educate a local primary care doctor or pulmonologist about the process.
“My situation is unique because my sister had a lung transplant 18 years before I needed one, and we were born with the same disease (cystic fibrosis), so I knew to start seeing lung transplant specialists early on,” said Kim Cable, communications director for the Lung Transplant Foundation. “But when I would see primary care doctors about issues other than my lungs, and they learned I was considering a lung transplant, they were fascinated. They wanted to know all about the process. We tend to think that every doctor knows everything about every medical issue, but sometimes, patients can actually educate their doctors.”
The approach in Florida and in other states that form chapters will be two-fold: educating patients and educating physicians.
“We want to engage them and to connect them to the Lung Transplant Foundation to fund research to improve outcomes for transplant recipients,” Goldstein said.
Ways that the Florida chapter will engage its local community include connecting with the state’s lung transplant centers in Gainesville, Jacksonville, Miami and Tampa; speaking at local hospitals with pulmonary rehab programs; fundraising; and holding a yearly symposium to set an agenda for moving research forward. Goldstein envisions the eventual creation of regional sub-chapters in each state as well.
“Hopefully, Florida will be a model for other chapters in the country to make the Lung Transplant Foundation into a bigger, stronger, truly national organization,” he said.
If you are interested in starting a chapter in your state or country, email Jeff Goldstein at firstname.lastname@example.org.