COVID-19 sidelined East Bay soccer coach Jon Lipsitz.
“It was unlike anything I’ve ever felt,” he said.
Surviving COVID-19 in December was a hurdle; since then, he’s endured a health marathon.
“I thought I was getting better. Then, I never did,” he said.
Jon says he has ongoing fatigue, brain fog, breathing trouble, and weakness that all limit his coaching.
“I used to be very active and involved in every drill,” he said. “Now, I just want to wake up and have a day where I don’t say, ‘Oh, gosh this hurts so much,’” he said.
Jon said feels the ongoing effects of COVID-19 daily. “It’s every day, without fail,” he said.
Jon is what many call a COVID-19 “long-hauler.” He applauds his HMO, Kaiser Permanente, for excellent care while he was initially sick. He says everything was fully covered, including three emergency room visits. But lately, he’s feeling let down.
APPROVED, APPROVED, REPEAT...
Jon says his Kaiser physician recommended he see a specialist at a COVID-19 long-haul clinic. But Kaiser didn’t have one, he said. So, in February, Jon asked to go out-of-network. For the next five he said he was stuck in a paperwork shuffle. He said he’d get approval from his Kaiser family doctor and a Kaiser infectious disease doctor, but then the Kaiser insurance arm would step in.
“They would refer me back, he said. “So, I was in a loop.”
Jon said he expected Kaiser to do more – and quickly. “Kaiser should have listened to their physicians and should have allowed me to go outside of Kaiser,” he said.
NBC Bay Area shared Jon’s story with Dr. Lekshmi Santhosh, who is Medical Director at UCSF’s Post-COVID OPTIMAL Clinic.
A LONG-HAUL DOCTOR'S OPINION
“This is not an uncommon story,” she said. “It's a story that I've heard a lot.”
Dr. Santosh said her team has treated 300 COVID-19 long-haulers. She said many COVID-19 survivors need specialized care. She predicts insurance companies could save money if long haul patients could see long haul specialists instead of bouncing from doctor to doctor.
"If I were to wave a magic wand and be in charge of a health plan, I think it would be wise to look at those cost savings of concentrating care in situations like this,” she said.
Are health insurance companies covering treatment specifically for long-haul COVID-19? The group that represents them, America’s Health Insurance Plans, said it’s basically a work in progress.
THE NATIONAL PICTURE
In a statement, AHIP said, “efforts are underway to help the health care system identify and code for long-term COVID.”
“Code” is jargon for how hospitals and doctors get paid for treating patients. AHIP said post-covid treatment will be “discussed and officially implemented” during a code conference in mid-September. But Jon’s feeling lousy now.
“I’ve had some good weeks. April was pretty good,” he said.
So, he asked us to speak up for him. We did. Jon said Kaiser then approved his referral to the out-of-network long-haul clinic.
NBC BAY AREA RESPONDS
“The last thing I wanted to do was be on TV talking about how weak I have felt and how hard this has been on my family,” he said. “But, I will tell you I am greatly appreciative of NBC and what you’ve done.”
Kaiser Permanente declined to discuss specifics of Jon’s case. In a general statement, it said, “as more has been learned about this virus, our practices have evolved.”
It also said, “Kaiser Permanente has recently created its own physician-led group to address the specialized needs of long-term COVID-19 patients and coordinate their care.”
If you or someone you know survived COVID-19 but now feels ongoing symptoms, Jon says your goal should be to demand specialized care. If you’re denied, here’s how he’d coach you: “Keep pushing,” he said. “And say, ‘If I disagree, who do I go to?’”
HOW TO COMPLAIN & GET AN ANSWER
Any time you feel your health insurance company isn’t treating you fairly or is ignoring you, you can file a complaint with the state.
The Department of Managed Health Care’s phone number is 1-888-466-2219. Insurance companies are required by law to respond to DMHC, so you should get an answer.
Have a consumer complaint? Let us know, so we can help.