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Rep. Les Gara
A Note from Rep. Les Gara

 
Troy Chapman’s New Life: A One-Year Anniversary Worth Learning From

Trouble Viewing (especially Yahoo users)?  Try clicking here:
(http://www.akdemocrats.org/gara/091709_note_from_gara.htm).

Dear Neighbors,

In politics too much attention goes to the divisive issues no one will ever agree on.  To little goes to the everyday problems people like Troy Chapman and his family needed solved in 2008. 

It might feel good to heed the worst TV and radio talking heads, the worst political strategists and the worst politicians – those who make their money and hold power by trying to divide us.  The ones who, today, tell you to call your best neighbor a “Nazi”, a “Socialist” or a “liar” for, gasp, daring to hold a different opinion on how to solve our nation’s problems.  Honest debate is classically American.  Name-calling is what you do when you don’t have better ideas than the ones you criticize. 

Troy and Les finally meet just before the one-year anniversary of Troy’s transplant
Troy and Les finally meet just before the one-year anniversary of Troy’s transplant.

If contrived outrage floats your boat, then don’t read on about Troy. 

Troy and his family had a real reason to be outraged.  But they acted with dignity.  Those who lent a hand, like Laurel Pfanmiller-Azegami, his parents, our local police, and Troy’s neighbors, moved forward quietly, with purpose.  Tomorrow Troy will celebrate the one-year anniversary of his new lease on life because of that.  A lease that lets him hike Lazy Mountain and the Butte, enjoy time with his family and friends again, and attend college. 

Because of Troy’s courage, others in his shoes won’t face the frustration and difficulty that almost took his life a year ago.  That was Troy’s.  He’s succeeded.  No one will have to walk in those shoes again.  Troy and I talked about that today, when he came to Anchorage so we could finally meet. 

Troy was born with Cystic Fibrosis.  You’d never know that sitting with him today.  You might not know what Cystic Fibrosis is.  People don’t get elected fighting over it.  Cystic Fibrosis is a disease that creates a thick mucus that chokes lungs and breeds infection.  The life expectancy for people like Troy used to be closer to 20 years.  Now it’s up to 37 and moving.  Troy’s in his mid 20’s, and looks like any other college student you might know. 

In 2008 Troy was slated to get a needed lung transplant.  He needed it to live.  But Alaska remained one of the states that hadn’t updated it’s laws with the advances in medicine, that extended the lives of those with Cystic Fibrosis far into adulthood.  So, after age 21, Alaska’s Medicaid rules didn’t cover lung transplants for people with cystic fibrosis (Where was the outrage of the talking TV, radio and political heads on that one?).

Troy and his family tried hard to get the rules changed.  Anchorage Police held a fundraiser to help Troy raise the money he needed for his care.  I didn’t know about any of this until a very smart, compassionate civic activist I know, Laurel Pfanmiller-Azegami, called in the summer of 2008.  And when my summer intern, Maeve McCoy, and I talked for a moment I didn’t know if we needed to pass a bill, change a regulation, or get a public official to just change their mind.  Maeve was pretty adamant that we do something, even though we didn’t know what that was at the time.   If there was any chance I’d let this one slip by, Maeve wasn’t going to have any of it. 

Voice Your Opinions!
Voice your opinions!
Letters to the editor make a difference. You can send a 225-word letter to the Anchorage Daily News by e-mail (letters@adn.com); or by fax or mail (call them at 257-4300). Feel free to call us if you need factual information to help you write a letter.
Contact the Governor. The Governor can be reached at 269-7450; sean.parnell@alaska.gov; or www.alaska.gov.
Contact us. My office can be reached at: 716 W. 4th Ave, Anchorage, AK 99501; by phone: 269-0106; visit my website at http://gara.akdemocrats.org; or email: representative.les.gara@legis.state.ak.us

We wrote the state Medicaid folks, and were told Alaska needed a new regulation – which couldn’t be passed in time for Troy to get his transplant.  Troy’s family, in the meantime, began trying to qualify for Washington residency, because that state covered lung transplants.   I dug back into my second year of law school, and knew departments could pass “emergency regulations”, and we contacted the state again, to request they take that approach.  And newly appointed Commissioner Bill Hogan, who has 7,000 emergencies to deal with in the state’s biggest, most complex agency, intervened to say that made lots of sense to him. 

Troy all along said that he wanted the rule changed, not for him (he was working to try to get coverage by moving out of Alaska to Washington) – but really so no one would have to go through what he spent much of 2008 going through.  He meant that.

Troy and I have written and spoken in the past.  I’ve spoken to his father.  And a while back Troy called to see if we could finally meet after all this.  We met today.  I met a college student who looks like he climbs mountains.  He said in December that he wanted to hike this summer.  And he has.  There’s a metaphor there somewhere.  Here’s a link to a Daily News Story (http://www.adn.com/626/story/633748.html ) and Editorial (http://www.adn.com/opinion/story/534076.html ) if you’d like to know more.

Politics should be more about folks like Troy and Laurel, like Troy’s parents John and Autumn, like police who hold fundraisers for our neighbors, and like a commissioner who’ll find a way to change a bad rule.  In reality, the day to day workings of government have little to do with the emotional, divisive issues no one will ever agree on.  The latter get some people elected.  The former get things done. 

Happy Anniversary Troy.

As always, call if you have any questions, or thoughts you’d like to share.

Best Regards,

[signed] Les Gara

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