Former NHL forward Gene Carr at Universal Studios where he worked as transportation co-ordinator after retiring from hockey. The 64-year-old former first-round pick has been told he needs a stem-cell operation to cure his ailing back.JILL CONNELLY/The Globe and Mail
Numbers: Gene Carr used to like numbers – minutes played, goals scored, fights fought. Those were the numbers that carried him through 10 seasons in the NHL. Now he keeps tabs of a different kind – trips to the hospital, pills prescribed, surgeries needed.
By his count, Carr has had three neck operations along with six back surgeries, two knee operations and a hip replacement that had to be redone because the titanium used in the first operation wasn't strong enough. Not all of those surgeries were done at the Providence Saint Joseph Medical Center in Burbank, Calif., close to where Carr lives, but there were enough, he jokes, for the hospital to consider naming a wing after him.
"Gene Carr, Left Wing," the former Los Angeles King said with a laugh. "Thank goodness I had some health coverage [from his post-hockey career]. A lot of guys down here don't have anything."
No one knows exactly how many former hockey players from the 1950s to the late 1970s are hobbled physically and strained financially. Some say the number is in the hundreds; others say thousands. Ex-athletes living in the United States with little or no postcareer savings are eligible for Obamacare, the government wellness program, but that's not enough to cover the high cost of having stem-cell transplantation.
But this week, two significant developments offered hope. The first was confirmation that former hockey players living in Canada and the United States now have access to the Society For Professional Athletes, a non-profit organization in Warren, Mich., that provides expert advice on a number of topics and a path to health insurance. It is a seminal moment for former U.S. players to have the kind of health care their Canadian counterparts have always enjoyed.
The second development involved Carr specifically. The 64-year-old former first-round draft choice of the St. Louis Blues has been told he needs a stem-cell operation to cure his ailing back. While he is insured by the Motion Picture Industry Pension and Health Plans – he worked at Universal Studios as a transportation co-ordinator for 24 years – his cost for stem-cell surgery is a hefty $30,000 (all figures U.S.). It's also a procedure rife with controversy, from the use of embryonic stem cells to the fact there is little scientific data proving stem cells work as advertised in certain procedures.
"It's true: There are very, very few stem-cell therapies that have good evidence supporting clinical application," said Tim Caulfield, Canada research chair in health law and policy. "It is an exciting field. The therapies will come. We aren't there yet for most conditions."
The owner of a string of private health-care clinics in the United States has offered to do Carr's stem-cell surgery for free as part of a 20-patient study. The owner, who doesn't want her name used, met former NHL player and head coach Steve Ludzik at a football fundraising dinner in Chicago. She told Ludzik her clinics were looking for people who needed stem-cell surgery; Ludzik thought of Carr.
"She's using the surgeries as a data base and that's why it's free," said Ludzik, who raises funds for his own affliction, Parkinson's disease. "She's very interested in working with us."
Ludzik joined forces with Kurt Walker to support the hard-luck players of their generation and the one before that. Walker has a Facebook page called Dignity After Hockey. He played the enforcer's role for the Toronto Maple Leafs and has a list of surgeries as long as Carr's. Living in Atlanta, Walker appreciates just how meaningful it is for ex-players to have the Society for Professional Athletes at their call.
"Now I know that when the guys join the SFPA [for a $100 fee] they are assured of receiving a health-care plan that suits their needs," Walker said. "They have to pay for it, and we knew that, but at least now we have a plan."
The SFPA health-care plan provides current or retired pro athletes with a case manager and access to specialists in a variety of fields. Players in extreme need of medical coverage can apply for access to benefits exclusive to the society. The company's directors review all requests before making a decision. If it's a go, the money will come from the donations and sponsorships the SFPA has pooled for emergency cases.
Benjamin Galliway is the society's executive director and works with athletes from football, baseball, basketball, soccer and other sports. Adding hockey players, he said, was a comfortable fit. They wanted health care-coverage and Galliway had the model to make that happen.
The society has been successful in getting coverage for its members, even some with pre-existing conditions. It has been able to accumulate and negotiate a wide range of benefits.
"We have programs that deal with mental health, drug addiction, suicide prevention, financial mental wellness, faith and family," Galliway said. "These are the core of our efforts. Health and money mean nothing if the player is not stable emotionally."
Walker has played a prominent role in fighting for health care for what he calls his "band of brothers. You see a guy on your team getting beaten up, you jump in. This was the time to jump in."
Walker made a leap of faith months ago by asking what the society could do for players who weren't getting satisfaction from the NHL, the Emergency Assistance Fund – a separate fund for the benefit of former players in need – or the NHL Alumni Association. Walker said when he and others in the U.S. talked to the NHLAA about health issues, they were told to sign up for Obamacare.
Given its limited budget, the NHLAA does what it can for former players. The larger contributions come from the NHL and the Players' Association. They each contribute $3-million annually to help supplement a pension for retired senior players, 65 or over. The league also collects player fines levied during the season and puts them in the Emergency Assistance Fund. NHL vice-president Brian O'Neill used to manage the fund by himself. Now, with $8-million in the assistance bank account, a group consisting of NHL and NHLPA representatives decides which player gets how much money.
Carr asked for $30,000 to undergo stem-cell replacement. He asked if he could take it as a loan. He was told no on both counts.
"One of the reasons why I was turned down was because I wasn't in dire straits," said Carr, who resides in Los Angeles's Sherman Oaks neighbourhood, Calif., and can no longer walk without crutches or a cane. "I have so much pain I can't sleep more than a couple of hours a night."
Carr is interested in what happened 11 months ago when hockey legend Gordie Howe suffered a debilitating stroke that paralyzed the right side of his body. Some stem-cell procedures are not allowed in Canada and the United States because they haven't been approved by Health Canada or the U.S. Food and Drug Administration. Howe went to Clinica Santa Clarita in Tijuana, Mexico, where he had stem-cell surgery. Howe's son Murray, a doctor, was there and was quoted as saying he had never seen anything like it. Coming in, Mr. Hockey was 86, struggling to move and talk. Coming out, Howe was speaking again after just eight hours and has made a remarkable recovery.
Ludzik and Walker have buddied up with Players Helping Players, an online information destination for players and fans, too. Former NHL defenceman Jim Dorey and his friend Chris MacKeigan launched a website as another step in getting former NHLers informed on what is out there for them.
"I've talked to 100-plus guys calling in to see what we can do – and I've never heard a player yet who has said this is a bad idea," Ludzik said.
As for Carr, he was back at Saint Joseph Medical Center on Thursday for a third operation on his neck. He's hoping for the day his stem-cell replacement surgery goes so well he won't have to visit another operating room ever again.
"I'd love to be able to move around and not be in pain," he said.