Lawmakers want Lou Gehrig's medical records

MINNEAPOLIS -- Some Minnesota lawmakers hope to force the release of Lou Gehrig's medical records, saying they could provide insight into whether the Yankees star died of the disease that came to bear his name or whether repetitive head trauma played some role.

Their effort comes despite opposition from Mayo Clinic, which holds the records, and skepticism from experts that the records alone would prove anything.

Rep. Phyllis Kahn, a Minneapolis Democrat and self-described baseball fanatic, conceded that the records "probably won't show anything."

"But just in case they might it's ridiculous not to look at them," she said Thursday.

Gehrig's death is attributed to amyotrophic lateral sclerosis, or ALS, a debilitating neurological disease that after his death in 1941 became commonly known by his name.

Kahn said she became intrigued after reading about a widely publicized study in 2010 that suggested a potential link between repetitive brain trauma in athletes and ALS. She noted that Gehrig suffered several concussions during his career, in which he set a record for the most consecutive games played, and that he played football at Columbia University. Given all the information that's emerged in recent years about the long-term effects of head trauma in athletes, she said, it would be useful to know what Gehrig's records say.

Kahn said she and other lawmakers hope to change state law to allow release of health records of patients who have been dead more than 50 years, unless descendants object or the patient signed a will or health care directive to the contrary.

Gehrig has no living relatives to give consent. Mayo Clinic spokesman Nick Hanson said the clinic can't discuss a patient without their consent or permission from a legally authorized decision-maker such as family or an estate administrator.

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

Several medical experts say they strongly doubt the records would shed any new light on the theory that Gehrig might have died from something other than ALS. That includes the author of the study that caught Kahn's eye, Dr. Ann McKee.

"I don't think the medical records would be helpful," said McKee, chief neuropathologist for the National VA Brain Bank and co-director of Boston University's Center for the Study of Traumatic Encephalopathy. "It really requires looking at the tissue and he was cremated, so it's not possible."

The president of the foundation that holds the intellectual property rights to Gehrig's legacy agreed.

"I fail to see what virtue this would have," said Dr. Rodney Howell, president of the Rip Van Winkle Foundation, which was founded by his father-in-law, Dr. Caldwell Esselstyn Sr., who was Gehrig's personal physician. Howell is also chairman of board of the Muscular Dystrophy Association, which funds ALS research.

Even today, Howell said, ALS is diagnosed primarily by its symptoms and by signs of deterioration in the nerves that control voluntary movement. He said his views are guided heavily by the work of Dr. Stanley Appel of the Methodist Neurological Institute in Houston, one of the world's leading ALS researchers, who was dismayed to hear that the lawmakers are questioning whether Gehrig died of Lou Gehrig's disease.

"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," Appel wrote in 2010 editorial for the journal Muscle & Nerve that took issue with McKee.

McKee's study didn't mention Gehrig but she raised his case in subsequent media interviews that left ALS patients "distraught" over the implication they might have been misdiagnosed, Appel recalled Thursday.

Appel said he agreed with Mayo that Gehrig's records should remain private. He said there's no way the limited data in records that old could yield any new scientific knowledge about whether his condition was linked to his concussions because the consequences of repeated head trauma in athletes have become understood only recently.

Kahn, a state lawmaker for 40 years, has a background in biophysics and a reputation for longshot legislation. Some of her past proposals have included a push to lower the voting age to 12 and to make the Minnesota Twins publicly owned. Given that Gehrig attended Columbia University, Kahn said, he clearly had a good education and a lot of intellectual curiosity.

"It seems to me that if he were alive he would be authorizing it," Kahn said.

Gehrig biographer Jonathan Eig thinks so, too.

Eig said he tried unsuccessfully to get Gehrig's medical records while researching his 2005 book "Luckiest Man," but said he was able to interview Mayo Clinic doctors who saw the records, including one who knew a doctor who treated Gehrig. He said they confirmed that the ballplayer had the classic symptoms of ALS.

Gehrig was a strong supporter of ALS research, Eig said, and submitted himself to all kinds of experiments. And since Gehrig is still the ultimate symbol of ALS, he said, opening up the files would help the public learn more about the disease, even if they don't prove anything about his potential head injuries.

"My hunch is that he would be all in favor of public disclosure," Eig said.