It Takes a Team:
Family and Friends Rally around PH Patient to Fight for Transplant
By Don Burdolski
Sometimes being a caregiver involves more than providing medical assistance. When insurance obstacles arise, it often means becoming a patient advocate. In the case of my wife Kathy, her brother Chris led the dynamic advocacy efforts to convince our insurance company to approve Kathy’s double lung transplant.
Kathy was diagnosed with PH in September 2006 at the University of Kansas Medical Center in Kansas City, Mo. In August 2008, she went to the University of California, San Francisco (UCSF) Medical Center for a lung transplant evaluation. In addition to severe lung damage from pulmonary hypertension, scleroderma and Raynaud’s disease, the doctors determined that she was also in right heart failure.
At the time, she was also suffering from pancreatic cysts, and after confirming that these cysts were not problematic, Kathy was listed for a much-needed heart and lung transplant in October 2008. A multitude of things occurred during the next month, including removal of a squamous cell carcinoma (a form of cancer) and a skin graft.
Even as she healed from all these health problems, doctors were able to keep her on the transplant list with an inactive status. In January 2009, doctors found her heart stronger and determined she would be able to sustain a double lung transplant.
Getting Too Sick Meant Being Removed from the Transplant List
In March, Kathy had a series of infections and her kidneys shut down. Unfortunately, this lead to her temporary removal from the transplant list. However, Kathy fought off each infection with her brother Chris constantly by her side. As one of her main advocates, Chris talked with doctors every day about Kathy’s progress and transplant listing status. In early April, Dr. Charles Hoopes made the decision that Kathy could be relisted for a lung transplant.
At this point, Kathy began a new battle, but this time with our health coverage provider. Our provider would not approve Kathy’s reinstatement onto the transplant waiting list. As a self-funded health coverage (“insurance”) plan, the company was directly responsible for the costs and approval of treatment. They hesitated for two weeks, finding reasons not to put Kathy on the list. At this time, more action was needed and a remarkable team came together to advocate on Kathy’s behalf.
Advocating On a Daily Basis
Chris continued to support Kathy, and he encouraged the doctors to advocate on her behalf. Dr. Hoopes called our health coverage provider on several occasions, insisting that they approve Kathy’s relisting.
Meanwhile, we contacted Governor Jay Nixon of Missouri, State Senator Jolie Justus, and State Representative Jason Kander for support. Governor Nixon sent an email advocating on Kathy’s behalf to the Missouri Department of Insurance, a state institution designed to protect insurance consumers by regulating industry practice. Representative Kander also called my former employer to insist upon their approval to reinstate Kathy onto the transplant waiting list.
Amazingly, the approval came at the end of three weeks. Dr. Hoopes, many other doctors and nurses at UCSF, Chris, our elected officials and countless others were critical in overcoming Kathy’s insurance challenge. Their numerous phone calls, constant follow-up, dedication and support made the difference throughout this entire process.
My wife remains listed for this transplant, and all of us hope and pray that it will occur soon.
In memory of Kathy Burdolski, PH patient.