When he started to notice a couple of things about himself that were “off,” Bobby Mukkamala, MD, president-elect of the American Medical Association (AMA), chalked it up to getting older.
“I’d be talking to patients in the exam room, or just having a casual conversation, and then having that moment of maybe 15-to-20 seconds of just trying to find the right words, getting lost in what I was trying to say,” said Mukkamala, 53. “I really thought that this was a senior moment, right? Or I’m taking a shower, and I close my eyes in the shower, and you lose that balance for just a couple of seconds, and I just thought, ‘That’s just normal. That’s just me getting older. I should start doing some balance exercises.’ This is what I tell my patients all the time.”
But in hindsight, he realizes what it really was — “seizure activity related to this tumor in my brain.”
A Moment of Not Making Sense
Things came to a head earlier this month at the AMA’s interim meeting in Orlando, Florida. Mukkamala, who is the AMA Board of Trustees liaison to the House of Delegates Minority Affairs Section, was giving the section a 5-minute board update.
“It was something that should have just been very routine,” he said. “But about 2 or 3 minutes into it, I had this moment of what we call expressive aphasia, where I was just not making any sense — I was speaking English, and all the words make sense, but together it’s not a coherent thought.”
“I thought, ‘OK, it was because I looked down at my phone and my screen was blank because somebody texted me and I missed my place in my speech,'” he continued. “And so in my mind, I sort of came up with an excuse to have a ‘brain fart’ and after that I recovered and then went on and closed” the talk. He went to the next room to give another talk to a different group, but “by then word got out in the first room that ‘Holy cow, Bobby Mukkamala had a stroke or a TIA [transient ischemic attack] or something. Where is he? Don’t let him go anywhere.'”
He decided to go to the nearest urgent care center to get checked out, noting that he called them in advance and told them he’d prefer to be seen by a physician. “They said, ‘Well, we have a physician available to review [the results].’ And I said, that’s good enough.” He got a standard cardiac workup, which showed normal blood pressure and no sign of atrial fibrillation.
Mukkamala consulted with a neurologist who advised him to get an MRI as soon as he got back home to Flint, Michigan, to better confirm whether he had had a stroke or TIA. The rest of the AMA meeting went without incident.
When he was back in Flint, he scheduled a 9 p.m. appointment for an MRI. “I’m sitting here with my phone taking pictures of the computer monitor, and the tech says, ‘You know, you’ve got a deviated septum and a benign cyst.’ I’m thinking, OK, that’s fine, but what about this 8-cm lump on the left side of my brain? I didn’t say anything to her but I noticed it right away.” It turned out to be what Mukkamala’s doctors think is a Grade 2 glioma.
MRI of Mukkamala’s brain tumor
A Treatment Plan Comes Together
When he got home, he sent the images to his father, a retired radiologist who happened to be in India at the time, and also shared the news with his wife and two children, as well as his mother, who was also in India. The next day, he had an MRI with contrast, unlike the first one. “It gave us much more detail, and it was off to the races with planning,” Mukkamala said.
The current plan is for him to have surgery in December to remove the tumor, followed by chemotherapy and radiation; that will likely take him away from his practice and his AMA work for 2 or 3 months.
“Assuming that things go well and they can remove 90% of this tumor, and then it comes back positive for a particular receptor that makes it amenable to a particular chemotherapy-type medicine, there’s a good chance that I will still be able to speak and make sense,” he said.
And if that happens, “I will be able to express myself in a way that I can fulfill my responsibilities as president of the American Medical Association” — his term as president is scheduled to begin next June — “and my responsibilities to my community as an otolaryngologist and to the patients that I try to serve,” he said.
Mukkamala said his experience made him appreciate how anguishing delays in getting test results can be. “If I had a CT scan of my chest to make sure that a head and neck cancer hadn’t spread, in this country nowadays, because of a physician shortage, we are waiting a long time for those results,” he said. “It used to be 24 hours. We’re waiting weeks for those results now in our office … The medical side is a pain in the neck because I want to know what the results are so I can do something for the patient. But from the patient perspective, to get accustomed to waiting 2 weeks, the stress of trying to find out if my lungs are clear of my cancer … is devastating. I can’t imagine what life would be like for patients waiting for simple results like that.”
The Value of Health Insurance
The experience also made Mukkamala appreciate the value of health insurance. “Literally, on this computer that I’m on right now, not even a month before this diagnosis, I’m on the healthcare.gov website, renewing my Affordable Care Act [ACA] policy and looking at premiums,” he said.
“I was looking at what that premium is going to be, figuring out what the bronze plan, which is what we usually do, is going to cost. I’m watching the cost go up every year, but thankful for not having part of that process have any questions about pre-existing conditions. ‘Do you have a diagnosis that you’re currently under treatment for? What is that diagnosis?’ Things like that used to be on our application for insurance. That would affect our ability to get insurance, with a footnote that says, ‘You had this before. This isn’t covered in the policy that you’re signing up for.’ That was what life was like in this country before the Affordable Care Act.”
Asked whether he was concerned about President-elect Donald Trump’s suggestion to replace the ACA and Vice President-elect J.D. Vance’s idea to separate people into risk pools for health insurance purposes, Mukkamala said he was “absolutely” concerned.
“The system, as fragile as it is and as imperfect as it is, has solved that issue,” he said, referring to pre-existing conditions. “And when you tinker with it to fix this issue, all of a sudden this solution starts to fall apart. And now pre-existing conditions somehow are something that can be used — that would be devastating. Any tinkering with it in an effort to improve it needs to be very thoughtful with a lot of minds — and I would say with physician minds, sort of at the center of that conversation, because at the end of the day, as I experienced this, when I think about who best advocates for people in my condition, it is my physician.”
If the treatment plan doesn’t work out as he hopes, Mukkamala has a backup plan. “If I don’t feel like I can be useful to my patients with their ENT needs — whether that’s a dexterity and surgery issue, or whether that’s a communication of what my plan is for their key complaint — I have a backup plan that I was planning on doing post-AMA anyway: my goal has always been post-AMA to teach math and science in Flint public schools,” he said.
“Our college readiness rates in Flint community schools — people that upon entry to college, are actually ready to take a college class — is 1%,” he noted. And although Mukkamala and his children were able to attend a private Catholic school in Flint that had much better college readiness scores, the 1% “is what my neighbors’ kids have to deal with … If my impact on my hometown — a place that welcomed my parents in 1972 and that’s been home ever since — is to be able to increase that 1% to 4%, then I will die a happy man, with or without a brain tumor.”
Joyce Frieden oversees MedPage Today’s Washington coverage, including stories about Congress, the White House, the Supreme Court, healthcare trade associations, and federal agencies. She has 35 years of experience covering health policy. Follow
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