The Curious Case of William Jay: Aging, Technology, and Preventive Health

Preventive health defined: stop trouble before it happens. It saves time, money and lives. It’s the clarion call for today’s health care system.

The intersection of technology and prevention can offer older adults profound opportunities to take control of many illnesses – especially diabetes.

Yet with ageism one of the last acceptable cultural prejudices, even Medicare — the federal health program that insures older adults — has become a willing accomplice in the fight against technology to improve human health.

Just ask Berkeley’s William Jay, who has suffered from Type 1 diabetes since he was 12 years old. After dozens of episodes throughout his life resulting in confusion, unconsciousness and other drastic health problems, he finally gained control of his diabetes at age 68 by sporting a continuous glucose monitor, or CGM.

At the beginning of this year, however, Jay stepped into a twilight zone of broken promises and Kafka-esque doublespeak when the organization providing his supplemental Medicare insurance – public employer CalPERS – switched plans.

Jay, long-time controller for a small computer fabrication plant in Silicon Valley, was dismayed at the switch: Blue Shield’s Medicare plan covers his CGM while new insurer United Healthcare’s Medicare Advantage plan doesn’t.

And so began a bureaucratic nightmare for Jay and his wife Madeline, who has kept detailed records of the family’s struggle.

The CGM sensor attaches to the body where a tiny needle pierces the skin and transmits constant data – “where glucose is, where it’s going, and how fast it’s getting there” according to a manufacturer – even in the middle of the night when finger sticks are impossible. William Jay, now retired, has become intimately familiar with the late night alarm, which wakes him and spurs ingestion of a glucose tablet, liquid or gel.

In one six-month period before William began using the CGM, Madeline had to call the ambulance five times as her husband suffered seizures or lost consciousness.

The turning point? In 2010, during a checkup, William fell unconscious right in front of his doctor. The physician immediately prescribed the CGM, and since then William has been trouble-free even after an alert sounds.

“That’s the time to do something,” says Madeline. “Not call an ambulance.”

An executive at Dexcom, which manufactures William’s GGM, finds the denial of coverage shocking.

“This has become the bane of my business,” says Claudia Graham, senior vice president of global access for San Diego-based Dexcom. “It’s ridiculous reasoning.”

Graham says “99% of commercial payers” — the competitive health insurance market that exists before Medicare takes over — herald CGMs as cutting-edge life-savers and money-savers, and happily insure the devices.

But this quickly ends under Medicare.

“They age out and terminate at 65 and Medicare says that the way the CGM is used today… it’s not eligible for coverage,” says Graham. “They turn 65 and they can’t get continued access.”

“It’s cheaper to buy the sensors than deal with all the repercussions of not having them,” says William, 74.

To Medicare, the critical term is “durable medical equipment,” or DME.

Medicare does cover the simpler and cheaper glucose monitor which pricks the skin and measures glucose levels manually.

But a Medicare representative said CGMs aren’t covered as durable medical equipment for a variety of reasons, including this one: “Because it is a precautionary or safety device.”

But isn’t prevention the grand slam of modern healthcare?

“The medical technology is advancing so quickly but the Medicare world is pretty black and white,” says Graham. “There’s no place for these new technologies to fit.”

Ironically, the organization that oversees Medicare — the Centers for Medicare & Medicaid Services — has a vibrant Innovation Center to improve services and quality. Its home page trumpets “Making Americans healthier by preventing illness.”

It’s not the first head-scratcher faced by the Jays.

Madeline says the CGM sensors cost $300 a month with the transmitter and receiver both costing about $600 each — and last for two years. Annual total cost is just over $4,000 and ensures both seamless health and peace of mind for the Jays. Compare this, she says, to a one-night hospital bill (before the CGM) which tallied a whopping $10,000.

She also has kept a comprehensive log of their efforts that began just days after the family received notice from CalPERS about the policy change last August.

Almost immediately she contacted United Healthcare — the new insurer – asking whether the CGM was covered. Yes, they “routinely made exceptions for medical necessity,” according to Madeline.

Better yet, CalPERS confirmed that even if United Healthcare declined coverage, CalPERS would override their denial.

After January 1 of this year, however, United Healthcare did an about-face and said the CGM wasn’t covered except when meeting very strict guidelines.

Madeline’s detailed summary of their efforts is a head-spinning document of false leads, dead ends, frustration and mind-numbing confusion that includes new endocrinologists, a “buy and bill” program, conversations with a liaison between United Healthcare and CalPERS, and endless letters, emails, phone calls and appeals.

Yet the Jays have persisted.

Finally, on February 18, United Healthcare approved the CGM sensors. But the next day the company called back and said — oops, no — coverage was once again denied.

The Jays appealed yet again, as Madeline requested phone transcripts from United Healthcare that included this Kafka-esque gem from one employee: “The appeals process is going to go through a full review but it will not be approved.”

Currently there are bills in each house of Congress to require that CGMs are covered by Medicare. And Dexcom continues to work with the FDA to expand coverage. All of this is underpinned by a huge coalition of diabetes advocates.

Two Bay Area organizations — Rock Health and Aging 2.0 — herald technology improvements as central to the future of healthcare delivery.

And last month AARP released a report about the critical role of new technology tools for caregiving.

Constant monitoring of the body’s intricate workings is today becoming commonplace. In the future it will be as ubiquitous as owning a cell phone.

During their lengthy ordeal, the Jays have appealed to everyone involved – United Healthcare, Medicare and CalPERS – all without success.

“CalPERS has not replied to us directly,” says Madeline. “I have repeatedly asked CaPERS for that override… and I get no response.”

A CalPERS media spokesperson said the organization simply follows guidelines set by Medicare, but that appeals are sometimes escalated to the CalPERS Board of Directors: “There’s an outside chance it could be approved by us.”

United Healthcare declined to be interviewed for this story.

Today, the Jays are preparing for yet another appeal, this time before an administrative law judge on June 2. After so much bureaucracy and defeat, however, Madeline Jay isn’t optimistic about the chances for victory.

Graham is more hopeful.

“They’re going to win,” she says. “This is a life-saving technology and it should be covered.”

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