If you are battling a chronic illness, odds are you have also battled health insurance. My son Cullen managed his pulmonary hypertension (PH), received a heart and double-lung transplant, and survived almost six years post-transplant without running into any major health coverage roadblocks.
Any issues were quickly resolved with a letter from the doctor and/or persistent calls from a pediatric nurse. I recently came to appreciate how fortunate we were to have our energy go primarily toward caring for Cullen, and not dealing with insurance red tape.
In a previous column, I shared Cullen’s transition from pediatric to adult care. We performed an intricate dance for over a decade between receiving primary care in California and coordinating health maintenance at two medical centers in our home state of Washington. As an adult in need of whole patient care from many specialists, depending on multiple hospitals felt insurmountable at this point. Now was the perfect time to condense Cullen’s medical care to one hospital close to home. Supported by his pediatric team, we unanimously decided on a hospital in Washington best qualified to treat a heart and lung transplant recipient battling kidney disease and other coexisting conditions.
In another column I shared how well the passage from pediatric to adult care is going. Sadly, an unforeseen change almost brought an abrupt end to the progress we had made.
My husband’s insurance changed in May. I immediately contacted the new carrier and confirmed that Cullen would be covered at the Washington hospital he was transitioning to. In July, relief switched to shock when our insurance company informed us that coverage at that medical facility would be denied as of August 1.
I was told this in a matter-of-fact, end-of-story way, which woke the mama bear in me. I’m a firm believer in the adage that “you can catch more flies with honey,” but this situation woke the bees and my tone of voice was buzzing.
“This is unacceptable,” I said to the insurance representative. “Cullen has complex health concerns and this medical center is the most qualified to treat his many needs.” I explained this in detail and an insurance transplant case manager contacted me the next day.
I was mentally prepared to speak in a persistent but professional tone. I didn’t want anger to distract from the reality of how life-threatening insufficient care could be to my son. I was also aware that “this call may be recorded for quality control purposes.” I hoped so because I wanted my concerns to reach far and wide.
The only option offered was for Cullen to reestablish care in California. That hospital saved his life more than once and we will always sing their praises, but at this point he needed a medical center close to home. Even if he returned to California, Cullen would still need doctors in Washington for check-ups and emergencies.
I thoroughly explained why Cullen requires many specialists. The case manager was concerned that needing so many would not help his case. Sympathetically she took copious notes. I did my best to paint the full picture. I explained the medical complexities of a heart and double-lung recipient fighting stage-3 kidney disease and other coexisting conditions. I stressed the importance of coordinated care between all the doctors.
The case manager made a heartfelt promise to help however she could, but ultimately the decision was not hers. A single case agreement was mentioned as a potential temporary “fix,” but it would require fighting for approvals every six months to continue his coverage. Medical care stability is crucial to Cullen’s survival, so this was not an acceptable option.
We continued with Cullen’s transition appointments, but I informed every care team past and present about what was happening. They were worried for other patients relying on the same insurance company. I hoped those patients were voicing their concerns and advocating for themselves, too. I called the case manager every day and checked with the hospital on their research into the matter. I prayed a lot and asked others to pray as well.
I felt like I was fighting an unwinnable battle. I was pleasantly surprised when we learned that the insurance company and hospital had signed a long-term agreement. In-network coverage will be available to ALL patients seeking care at this hospital from now into the foreseeable future.
I’ll never know if my efforts played a part in the decision, but it felt like persistence paid off. Most likely it was the tenacity of many that helped.
Do not be submissive when dealing with insurance. Speak up and encourage others in your boat to do the same. Persistence might pay off.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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