As hundreds protested loudly nearby, Tony Maynard of Mission Hills spoke inside a quiet meeting room at the Manchester Grand Hyatt on Wednesday. He told conservative lawmakers and lobbyists at the ALEC annual meeting how drug and treatment innovations saved his life — twice.
He told of growing up with hemophilia, becoming HIV-positive as a result of blood transfusions and eventually contracting — and beating back — AIDS. And how he lost his brother to that disease.
But Maynard didn’t tell all. He didn’t mention he’s a Democrat.
“Absolutely,” he said afterward.
He was disappointed in the turnout for the drug discovery and innovation panel. Out of 1,300 registrants at the 42nd annual American Legislative Exchange Council meeting, only 60 attended the workshop.
But Maynard of the Hemophilia Council of California was among panel members — and workshop moderator Rolf Benirschke, the former Chargers placekicker — defending their presence at a convention decried by liberals outside.
“I hope it wasn’t window dressing, because I’m here trying to educate people about what they can do as legislators,” Maynard said.
He called it a “bad approach to politics” not to engage other views. “To just yell at each other doesn’t help. We can’t be so close-minded.”
Benirschke of Legacy Health Strategies told the story of his near-death experience during his NFL days with ulcerative colitis and repeated the refrain that more drug discovery and innovation are needed.
“I don’t think this is a political message,” he said. “Disease is an equal opportunity tyrant. It doesn’t choose what party (you belong to).”
He said diseases can be eradicated by funding research, and panel member Scott Suckow, a mental health advocate, even used his speaking moment to urge more “base funding” for the National Institutes of Health.
Suckow said he tailors his pitch to the audience.
“One [group] might be interested in the human aspect and the other in the [cost] savings and health outcomes,” he said. “It actually costs taxpayers less money” to address what he called “wrap-around services” such as housing, transportation — “whatever it takes to get the client into treatment and to keep him there.”
“That’s something the states and local jurisdictions can provide,” Suckow said.
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With 15 minutes left, Benirschke called for audience questions.
Only one came. Republican Linda Upmeyer, Iowa House majority leader, asked Suckow to expand on needed mental health services.
Suckow noted how some patients know the drug they need but can’t get it because government agencies obey the “fail-first” philosophy — giving the cheapest drugs first before offering more expensive ones that work.
That can result in mental patients ending up in jail or needing ambulance rides or visits to the emergency room — “costing states huge amounts of money.”
Having heard that, Upmeyer said, “I concur completely. There’s no need to go through a bunch of drugs that don’t work.”
But Upmeyer, a nurse practitioner and member of the Iowa House for 13 years, took exception to the idea ALEC wasn’t open to policies some might consider liberal.
“Pigeonholing and blaming one party vs. another is not entirely accurate,” she said after the panel. “I think we have to make wise investments … targeted investments are very appropriate.”
She didn’t favor the Affordable Care Act (Obamacare) being scrapped either — “although it certainly needs to be improved. … Replace pieces that are problematic.”
Benirschke said this was his first time at ALEC and “had no expectations” on the workshop turnout. He chalked up the modest crowd to the existence of competing panels and meetings.
“We can eradicate disease in many ways by funding research,” he said. “And all of us on the panel (including Liz Helms of the California Chronic Care Coalition) are alive because of research and therapies.”
He sides with conservatives on some issues, however, supporting lawsuits limits and company efforts to protect their patents (which liberals say leads to gouging on drug prices).
Still Benirschke declared “I’m not a very political person. I really care about people.”
Asked about the chanting and sign-waving crowds north of the hotel, Benirschke said: “When you’re so dogmatic about something and become almost irrational, I don’t think it does your argument any good.”
“What we tend to do is put people in boxes — and criticize the box,” he said. “The only way this [disease scourge] gets solved is you get all the stakeholders together and say: Here’s the enemy we’re trying to fight.”
Maynard, who said he didn’t see any protesters when arriving for the 3:45 p.m. forum, called the name-calling “a bad approach to politics. It’s not being willing to discuss things — to just yell at each other doesn’t help.”
Suckow didn’t share Maynard’s disappointment in the turnout, saying the audience represented a sphere of influence that at some point could lead to a “light bulb” being turned on and result in progress.
“What we said today is a seed planted,” he said. “And when they make a decision, they’ll remember some of what we said.”
