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Lou Gehrig, left, of the New York Yankees and Dr. Robert Gilman went over a 1939 Mayo clinic report. Others now want to see those medical records.

, Associated Press

New York Yankees first baseman Lou Gehrig at bat in 1935.

, Associated Press

What's to learn from Lou Gehrig's death?

  • Article by: MIKE KASZUBA
  • Star Tribune
  • October 9, 2012 - 8:40 AM

The fight to make Lou Gehrig's medical records public begins in St. Paul, winds through Washington, D.C., and upstate New York, and ends at the Mayo Clinic in Rochester.

For 71 years, since the death of the legendary New York Yankee baseball star from amyotrophic lateral sclerosis, or ALS -- which became known as Lou Gehrig's disease -- the Mayo Clinic has kept his records private, citing federal rules and state law.

That stance has been challenged as the increasing focus nationally on athletes and concussions has led to speculation that science might be served by opening the records to see whether Gehrig, who had several well-publicized concussions, may have in fact died from repetitive brain trauma.

Some legislators in Minnesota are vowing again to try to pass legislation in January to force the disclosure, even as several leading medical experts said opening Gehrig's records would likely yield little new scientific knowledge.

Gehrig had no children and his wife, Eleanor, died 28 years ago -- leaving no one with legal standing to ask for the records.

Even the president of the Rip Van Winkle Foundation, the little-known entity in upstate New York that owns Gehrig's intellectual property rights, including his image, name and voice, has dismissed the pursuit as frivolous.

The Mayo Clinic continues to have little comment, stressing that, under law, only the spouse, parents or Gehrig's appointed representative have access to his medical records.

"Patient medical records should remain private even after the patient is deceased," said Mayo Clinic spokesman Nicholas Hanson. "Mayo Clinic values the privacy of our patients."

The disclosure proposal first introduced last year by Rep. Phyllis Kahn, DFL-Minneapolis, was co-authored by Rep. Mary Liz Holberg of Lakeville, a Republican House leader who specializes in open records issues.

Holberg said Tuesday she "thought the discussion was very worthwhile" on a broader level beyond Gehrig.

One University of Minnesota doctor has suggested Gehrig's case could have parallels with that of Hubert Humphrey, the former U.S. vice president from Minnesota, whose widow gave permission for Humphrey's tissue to be examined after his death to show that he had evidence of bladder cancer long before it was diagnosed and killed him.

The 1994 study published in the New England Journal of Medicine concluded that had Humphrey known he had signs of aggressive bladder cancer during a hospitalization in 1967 for urinary problems -- he died 11 years later -- "he might have withdrawn from the [1968] presidential race."

Records might not help

Yet even the Boston University doctor who suggested in 2010 that Gehrig may have died from concussion-related trauma -- and was herself criticized for drawing those conclusions -- said that reviewing Gehrig's medical records probably would not matter. Gehrig was cremated after his death in 1941, at age 37.

"The only thing that would solve the mystery is an autopsy. The medical records will not be helpful," said Dr. Ann McKee of Boston University's Center for the Study of Traumatic Encephalopathy.

Dr. Rodney Howell, the president of the Rip Van Winkle Foundation, shares that opinion.

He is the son-in-law of the late Caldwell Esselstyn Sr., Gehrig's personal physician in his final years. Howell is also the board chair of the Muscular Dystrophy Association, which provides major funding for ALS research in the United States.

Without an autopsy, "there is no opportunity to correlate anything from his records," said Howell, chairman emeritus of the University of Miami's school of pediatrics.

"This would have no value, frankly," he said of opening Gehrig's medical records. "I'm a little puzzled about why someone would be doing this unless they're running for re-election or something."

Kahn is running for re-election, but said politics has nothing to do with it.

Her one-page proposal does not mention Gehrig by name, but only asks that state law not prohibit the release of records of someone who has been dead at least 50 years, does not have a will that blocks the records release or does not have any direct descendants objecting.

Federal changes likely

Kahn, who holds a post-graduate degree in biophysics from Yale University, acknowledged that Gehrig's records may yield "absolutely no useful information," but added that "my cynical take on it is that the Mayo Clinic is just embarrassed to have misdiagnosed something that's been known for 70 years as Lou Gehrig's disease."

In response to the suggestion that Gehrig may instead have died from concussion-related injuries, Dr. Stanley Appel of Houston's Methodist Neurological Institute wrote that "whether head trauma may have played a role in Gehrig's development of ALS can never be verified, but it is a complete disservice to his place in history as an icon for ALS to suggest that his disease was not ALS."

Kahn is hoping to get a legal assist from the federal government, where a proposed regulation would only require a health institution to keep the medical records of deceased people private for 50 years after their death.

The issue, which has been debated by medical experts for at least five years, is expected to lead to the adoption of the regulation later this year.

But Kahn said the Mayo Clinic's chief lobbyist at the State Capitol in St. Paul, Erin Sexton, told her that even should the federal regulation be adopted, it would not necessarily force the clinic to produce Gehrig's medical records.

Sexton did not respond to an interview request, and the Mayo Clinic did not reply to specific questions on the topic.

Nancy McCall, the archivist of the Johns Hopkins Medical Institutions, said the current federal law did not mean Gehrig's records or those of other long-deceased persons were completely closed -- they can be reviewed now by researchers -- and that the proposed federal change did not necessarily mean they would be automatically open.

"They are accessible for purposes of research through waivers of authorization with [the] provision that [patient names] are not to be released," said McCall, who said only patients or their legal representatives could now authorize their release.

Dr. Douglas Yee, the director of the Masonic Cancer Center at the University of Minnesota, said he had some sympathy for Kahn's legislative push and pointed to the medical gains that resulted from the Humphrey case.

"The idea that making medical records open after a period of time has elapsed has a real ability to contribute to science," Yee said.

But Yee also said that without Gehrig's autopsy results, or his tissue, "it'd be of less value in this particular case."

Mike Kaszuba • 651-222-1673

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