His passion is LTC policy and funding, thank goodness

James M. Berklan
James M. Berklan

There is an unusually strong fire in Doug Burr that keeps him going, and for this, long-term care providers everywhere should be thankful.

No one could blame him if one day he simply said “enough” and took his brilliant analytical mind and passion for policy to the sofa in front of the TV. That's because Burr has experienced enough pain and suffering to make anybody want to retire from day-to-day struggles, especially if they include long-term care's unending frustrations.

But instead Burr (at right) has powered on, most recently promoting a long-term care funding plan he pioneered that is picking up steam in a handful of states. It's described by lawmakers and advocates as a “win-win” situation for providers, consumers and the government alike.

In brief, it involves tapping life insurance death benefits in advance for late-life housing and care. It is as as simple as Burr's odyssey of pain and suffering has been complex.

Many might know him only by his work. A former chairman of the American Health Care Association's research committee, he is an architect of LTC Trend Tracker. The web-based tool enables providers to access key government data to benchmark and make performance comparisons.

I first met Doug about 15 years ago at an AHCA meeting. We would subsequently run into one another several times per year. His in-depth grasp of policy — and moreover his stamina to discuss it at length — was always spot-on, sometimes to an unnerving degree. It's a bit embarrassing to admit, but the sharply dressed 30-something was so far beyond his years that, at times, it could be tough to keep up with his discussion of the issues.

He was, above all, a reliable champion of LTC policy. And then nothing. I didn't see him for at least three years before he called last week.

“I'm not just a long-term care policy expert,” he brightly confided to me on the phone. “I've also been a patient.”

In 2012, abdominal pains started. Trips to the gym couldn't erase the “knotted up, burning” feeling in his stomach. Symptoms spread and kept getting odder.

“Just a T-shirt sliding across my skin felt like somebody was using a steel brush on it, scraping my skin off,” he explained on Tuesday. He visited pain specialists, gastroenterologists, neurologists and “-ists” of many other types. Tests came back normal and doctors couldn't find a cause.

And the pains kept getting worse.

Burr says that's when his employer, Health Care Navigator LLC, really stepped up. It helped enroll him in a program that led to a write-up of his case that was circulated to major medical centers around the country. Clinicians at Baylor called and said they thought their part-gastroenterology, part-neurology program might be the answer. 

Burr was tested by more than a dozen specialists there. Questions remained. He had his gallbladder removed, but nothing changed. 

One day, his leg swelled to twice its normal size. Doctors thought a blood clot caused it but found none. Later, he suffered two cases of shingles, one on his back and one on his face. Bouts of blurry vision ensued.

Anti-seizure and anti-inflammatory medicines were prescribed. Doctors implanted a device intended to control abdominal pain.

To this day, nothing solves all the problems, says Burr, who is just 49 years old.

Doctors ultimately concluded that he suffers from complex regional pain syndrome (CRPS). It is a diagnosis of exclusions, he notes. Dozens of other conditions were ruled out, leaving a final diagnosis to deductive reasoning.

“This is a chronic condition that ranks just above labor and delivery, and amputation,” Burr said matter-of-factly on the phone. “Last spring, I was in the hospital for four days with all the signs of a heart attack. It wasn't one, but my body told my brain that it was. They couldn't find any muscle damage.

“It's literally like living with a terrorist within my body.”

Because of all the medications he's on, driving is out of the question. But he remains active with his company and provider associations. In fact, he leads a busy work life by phone from his Atlanta-area home office. 

As senior vice president of Finance Reimbursement and Government Relations at Health Care Navigator, Burr helps oversee the operation of more than 100 buildings and 13,000 beds. The settings are primarily in the Southeast and are mostly skilled nursing, hospice and rehab, with a handful of assisted living buildings.

Burr's wife, an accountant by trade, also works for Health Care Navigator. The couple have a pair of sons, 19 and 12 years old. They have all lived through this together, though, obviously, Burr has borne the brunt of it.

It hasn't prevented him from partaking in American Health Care Association discussions and other events. He can no longer chair committees, but he makes his presence felt.

AHCA Senior Vice President Greg Crist calls Burr a long-time “fixture in our world."

"One thing's for sure: We've come to know Doug's voice very well on the phone,” Crist says. “He is always eager to jump on the line and hash out some policy ideas. His health may challenge him, but his mind and determination are as sharp as ever. The association is very fortunate to have his expertise, even if we don't see his handsome mug at our meetings."

Many still might see him via Skype and similar technologies.

Lately, he's been most enthused about his home state of Georgia taking a hard look via HB 306, which centers on his insurance-conversion proposal. He first presented it to the Florida Legislature “many” years ago. Since then, there's been a “mini-onslaught” of similar legislation introduced in places as diverse as Texas, Maine and Connecticut. None have fully taken advantage of it, Burr says.

“Life insurance was never originally bought by policyholders to make their children wealthy,” he reminds. “There's no reason they can't be using the death benefit to help a person create a better life for themselves while they're still alive. The long-term care insurance marketplace isn't robust, but the life insurance market is.”

He says that while insurance companies were initially concerned about possibly being forced to make changes to existing policies (they weren't), they have since come aboard with his strategy. The only people who tend not to like it is heirs, he adds.

Unfortunately, Burr explains, Medicaid caseworkers often encourage policyholders to walk away from an insurance policy in order to qualify for Medicaid coverage. The result could be a loss of tens of thousands of dollars of equity or potential benefits. Burr also is against the use of viaticals — third parties that buy existing policies from holders for more than their cash surrender value but less than the net death benefit. The result, again, denies the full value of the death benefit from entering the marketplace — as much as $100 million annually in Florida, according to official estimates.

I warned you, this is heady stuff — in other words, right up Burr's alley.

He is still seeing multiple medical specialists, who are tracking him in a variety of ways. Mostly, he has learned to grit his teeth and carry on. If some afternoons he needs to lay on a floor or bed for an hour to re-energize, so be it.

“I used to travel 70 percent of the time for work. Now, I will go to the grocery store, visit my son at college and still go on vacation. But any type of travel now isn't particularly comfortable.”

“Pain flare-ups are very tied to stress," he adds, "so I try to keep a very even keel. It's very tough.”

Tough? It's darn near impossible in this business. But at least it's the right guy out there taking on the challenge.

James M. Berklan is McKnight's Editor. Follow him @JimBerklan.

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McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Emily Mongan.

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