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Palmer Says New Drug will Help Duchenne Muscular Dystrophy Patients

Brandon Moseley

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By Brandon Moseley
Alabama Political Reporter

US Representative Gary Palmer (R-Hoover) announced that the US Food and Drug Administration has approved a Duchenne Muscular Dystrophy (DMD) treatment that parents of Duchenne’s patients have been asking for, for a while now.

Congressman Palmer said in a statement, “On Monday, the Food and Drug Administration (FDA) approved a drug for Duchenne muscular dystrophy more than 100 days after the agency’s legally mandated decision date. The drug, Exondys 51 (eteplirsen), is the first of its kind and will benefit patients who have a confirmed mutation of the dystrophin gene amenable to exon 51 skipping.”

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Rep. Palmer continued, “This was a victory for those affected by Duchenne muscular dystrophy and their families. With the FDA approval of Exondys 51, some people impacted by Duchenne have new hope for an improved quality of life and a better tomorrow. I applaud all those who have advocated for this medical advancement, including one of my constituents, Gabe Griffin (Hope for Gabe, Inc.). While this medical advancement does not treat the cause of Gabe’s muscle degeneration, it is a step in the right direction towards creating and approving the drug that will.”

Gabe Griffin is an 11-year-old Shelby County resident who was diagnosed with DMD eight years ago.

DMD is a genetic medical condition caused by an absence of dystrophin in the body. This fatal disorder transpires from early childhood and causes progressive muscle weakness that eventually leads to serious medical problems. There is currently no cure for Duchenne. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys (Girls have two X chromosomes so the non-carrier X will normally override the carrier X and prevent expression of the condition). Most DMD patients are confined to a wheel chair by age 12 and most are dead by age 20.

In June 2015, Alabama Governor Robert Bentley (R) signed Senate Bill 357, “Gabe’s Right to Try”, into law. This bill allows patients with a terminal illness the right to authorize access to and use of experimental treatments after they have met certain requirements. SB357 was sponsored by Sen. Cam Ward (R-Alabaster). Presumably Exondys 51 was one of the treatments that Gabe’s family wanted to see made legally available.

Governor Bentley issued a proclamation in honor of Griffin on Monday proclaiming August 8, 2016 as Ride4Gabe Day to End Duchenne.

Hopefully today’s announcement will bring us closer to that end. The ‘Alabama Political Reporter’ extends prayers for Gabe and all Duchenne’s patients.

Congressman Gary Palmer represents Alabama’s Sixth Congressional District.

 

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A showdown is nearing for BCA’s Billy Canary

Bill Britt

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The Business Council of Alabama’s executive committee recently approved a succession plan to protect its embattled CEO Billy Canary, but when the plan was presented to a group comprised of the organization’s top members, Canary had deceptively altered the policy adopted by the committee for one more favor to himself. Alabama Political Reporter is also in possession of an email chain between committee members that eludes to a dramatic showdown between those protecting Canary and those who say he must go for the good of the state’s business community.

According to individuals with knowledge of both meetings, the succession course voted for and approved by BCA’s executive committee was not the one laid out to executives of Alabama Power, Blue Cross Blue Shield, Regions Bank, Drummond Coal and others known as the Big Seven who are calling for Canary’s removal, having grown weary with his failed leadership and prevarication.

Canary’s ruse was carried out with the knowledge of BCA’s current chairman, Perry Hand, and executive committee board members Denson Henry and Mike Kemp, who also attended the briefing with the Big Seven.

Kemp is President and CEO of Birmingham-based Kemp Management Solutions, LLC, and is next in line to replace Hand. Henry is Vice President of Henry Brick Company headquartered in Selma. Like Hand, Kemp and Henry have deep ties to the construction business.

Several days after the meeting, an email chain shows that Hand is dismissive of BCA members who express concern over the Seven’s displeasure with Canary. The chain begins with an email from executive committee member Tony Cochran from Albertville-based CK Business Solutions, PC.

“Good morning Perry,

I have communicated with a couple of other executive committee members regarding the succession plan approved at our last meeting along with the next steps. None of us have knowledge of where BCA currently stands regarding the next steps that were outlined.

Could you send us an email update, or if you prefer, organize a conference call of the executive committee? I am certain everyone on the committee is getting questioned by our other board members and possibly general members of BCA. It would be helpful to know where we are in this process and what is going to happen next.

Anxiously yours,

Tony Cochran”

Hand flippantly responds to Cochran’s concerns as if he has everything under control.

“Tony: A conference call will be lined up soon. Just hang in there. I’ve met with AL Power and the group of companies last week. Thank you.”

Next, executive committee member Alabama Power CEO Mark Crosswhite weighs in on the email exchange.

“Tony

I realize that you asked Perry where things stood, but I’ll provide Alabama Power’s view since I’m on the email distribution.

As Perry noted, he (together with Mike Kemp and Denson Henry) met with a group from Alabama Power and other members of BCA on June 4.

We were presented with a Transition and Succession Planning proposal, which I understood had been approved by the Executive Committee. While I appreciate the time that Perry, Mike, and Denson spent in meeting with us, the proposal lacked important details (a concrete timeline, committee structure, and so forth) and unreasonably delayed the transition of leadership at BCA.

I do not purport to speak for all the companies that attended, but the common feedback was that we should move forward with a transition plan as quickly as possible including an immediate public announcement of the transition, appointment of the various committees with representation across BCA’s membership (businesses large and small), and celebration of Billy’s tenure at the August meeting.

I have heard nothing since June 4, so I can only assume our suggestions have been rejected.

If anyone would like to discuss, please contact me (——–). Otherwise, I understand if you delete me from the email distribution list.”

In April, at an executive committee meeting, seven of the state’s largest corporations laid down an ultimatum: either Canary goes, or they do. Hand, along with a handful of Canary’s loyalists, have resisted change many believe for a personal financial reason, including Hand’s cozy relationships with former Gov. Bob Riley, who remains one of Canary’s stalwart supporters.

Canary and Hand’s deception at the June 4 meeting is seen as the last straw, leaving many of the state’s most prominent leaders more committed than ever to seeing Canary removed from BCA.

Henry and Kemp’s complicity in the ploy shows just how far Canary’s poisonous leadership has infected the once revered business group, according to those with knowledge of events.

According to APR‘s sources, the private struggle to restore competent leadership at BCA will soon become a public matter.

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Alabama poverty rate drops, still sixth most impoverished state

Bill Britt

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According to the latest numbers presented in the 2018 Alabama Poverty Data Sheet Alabama is still the sixth poorest state in the U.S., but it is improving if only by small measures. Surveys show that poverty, child food insecurity, homelessness and accompanied disadvantages take a toll not just on those enduring such hardships but on the state and nation as a whole. While the new analysis finds moderate improvement, the means to alleviate systemic poverty in Alabama are far behind most states.

“It is encouraging to see that fewer Alabamians live in poverty year-over-year, but we still have 800,000 friends and neighbors who face significant barriers to prosperity,” said Kristina Scott, executive director of Alabama Possible. “It is also deeply concerning to see that the median household income for people of color in Alabama is roughly $15,000 – $20,000 lower than the median household income for white citizens. We must advocate for equitable systems that will dismantle poverty and promote prosperity for all Alabamians.”

The recent survey by Alabama Possible, a statewide nonprofit organization that removes barriers to prosperity, finds the number of Alabamians living in poverty has dropped from nearly 900,000 to just over 800,000 which means 17.2 percent of Alabamians live below the federally recognized poverty line where the national average at 14 percent of the total population.

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The poverty line according to federal standards is $24,257 for a family of four in 15 of Alabama’s 67 counties the poverty rate is higher than 25 percent with eight counties seeing a poverty rate higher than 30 percent.

Perhaps most alarming is that 250,000 children live in poverty and that overall child food insecurity rate is at 22.5 percent, which is higher than the national average of 17.5 percent.

A study on the impact of food insecurity and hunger on child health, by John Cook, Ph.D., and Karen Jeng, AB, found, “While every American is morally offended by the existence of childhood hunger, pediatricians, and public health professionals see the tragic effects of this unnecessary condition graphically imprinted on the bodies and minds of children.”

The study by Cook and Jeng concluded that a child who suffers food insecurity is, “sick more often, and more likely to have to be hospitalized (the costs of which are passed along to the business community as insurance and tax burdens.” It also found that hungry children, “suffer growth impairment that precludes their reaching their full physical potential, and incur developmental impairments that limit their physical, intellectual and emotional development.”

Alabama Possible’s study shows poverty effects 13.6 percent of Alabama’s white population with Black and Hispanic citizens more than double that number at 30.1 and 32.6 percent respectively. Over 10 percent of individuals over 65 years of age live below the poverty level while female heads of household with related children in nearly 50 percent. According to the National Women’s Law Center, “being a woman increases the odds of being poor in America,” an Alabama Possible’s survey bears out that point.

Alabama’s median household income is $46,309, which is $11,308 less than the national median of $57,617.

Alabama Possible is a statewide nonprofit organization that removes barriers to prosperity through advocacy, education and collaboration in Alabama since 1993.

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This week in Alabama Politics: Ainsworth gets Mobile endorsements, Marshall Testifies, Parker prevails

Sam Mattison

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Here’s everything you need to know for this week in Alabama politics:

Ainsworth gets endorsements

Lieutenant Gubernatorial candidate Will Ainsworth (center) stands in front of a helicopter at a press conference announcing endorsements. (Photos Courtesy of his campaign)

Will Ainsworth, a candidates in the lieutenant governor’s race, received the endorsements of three people, which include state Rep. Jack Williams of Wilmer, Alabama, and state Rep. David Session of Grand Bay, Alabama.

The other two are law enforcement officials in the both Baldwin and Mobile County, two counties that have a significant role in the upcoming runoff race in July.

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In June’s primaries, the two counties swung heavily towards state Sen. Rusty Glover, who placed third in the lieutenant governor’s race. The question now is which of the two, Twinkle Cavanaugh or Ainsworth, will take the counties.

Glover has not endorsed either candidate, but did apparently talk to Cavanaugh on a phone call on election night.

Marshall goes to Capital Hill

Steve Marshall testifies before Congress on Friday.

State Attorney General Steve Marshall testified before Congress on Friday defending a lawsuit against the U.S. Census Bureau that he filed along with Alabama Rep. Mo Brooks.

The lawsuit details surround how the U.S. census will count immigrants in the country illegally. Currently, that group is counted in the census, and the Trump administration renewed calls this past month to include a question dealing with citizenship.

Marshall, who spoke before a house committee, said that counting immigrants in the country illegally will help make Alabama lose a Congressional seat and allow other states, like California, to retain their seats.

Tom Parker lawsuit finalized

Alabama Associate Justice Tom Parker claimed victory on Wednesday after a federal judge finalized an agreement between Parker and the Judicial Inquiry Commission.

The agreement had to do with revising the judicial cannons in Alabama that Parker said were restricting the First Amendment Rights of judges.

The lawsuit against the JIC came after Parker was investigated by the commission after the Southern Poverty Law Center filed an ethics complaint against Parker for comments he made on a radio show.

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Palmer Says New Drug will Help Duchenne Muscular Dystrophy Patients

by Brandon Moseley Read Time: 2 min
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