Martha Roby: Putting patients first
Remember these promises from President Barack Obama about his healthcare law? “If you like your health care plan, you can keep your health care plan…” “If you like your doctor you will be able to keep your doctor…” “We’ll lower premiums…” “No family making less than $250,000 a year will see any form of tax increases.” To many, they are unforgettable because they turned out to be untrue. Under Obamacare, many in Alabama and throughout the country did lose the health plans they liked. Many were forced to go to different doctors, to say nothing of the doctors who stopped practicing altogether. Premiums skyrocketed, and yes, many middle class families are impacted by new taxes, fees and penalties. One of those taxes, the Medical Device Tax, makes lifesaving equipment like pacemakers, artificial joints and MRI machines and subject to a 2.3 percent tax. The United States has always been a leader in medical innovation and treatment, but this tax on medical devices threatens to stifle that. Not only is our medical community harmed by the effects of this tax, but patients across Alabama and the United States are negatively impacted as well. That’s why this week the House of Representatives passed H.R. 160, which repeals Obamacare’s Medical Device Tax. The bill, which I co-sponsored, passed with a strong, bi-partisan vote of 280-140. It is now on its way to the Senate, which I hope will pass it expeditiously. Next week, we will take up another bill, H.R. 1190, to eliminate IPAB, or the Independent Payment Advisory Board. IPAB is an unelected, unaccountable panel with authority to slash Medicare payments. We must continue to push for sensible health care reform in place of costly, ill-advised provisions under Obamacare. Of course, I staunchly oppose the President’s health care law and have voted multiple times to repeal, replace or dismantle the law. Individual Americans and their doctors should determine which health care options best meet their needs, not federal government bureaucrats and politicians. Soon, the Supreme Court will rule in the pivotal King v. Burwell case, which could expose yet another broken promise of Obamacare and cause thousands in Alabama to lose affordable coverage. My colleagues in the House and I are carefully following this case and discussing legislation that will be needed to deal with the aftermath. I will keep you updated on any developments. More to come over the next few weeks. Martha Roby represents Alabama’s 2nd Congressional District. She is currently serving her third term.
Lawmakers grant final approval to Right to Try bill
Alabama lawmakers granted final passage Thursday to a bill that would allow physicians to prescribe terminally ill patients promising, but unapproved medical treatments. House Bill 463, known as the Right to Try Act, passed the House of Representatives by a vote of 97-0. The bill says that doctors caring for people with terminal illnesses can prescribe medications that the Food and Drug Administration has deemed promising, but not yet ready for mass consumption. Thursday’s vote makes Alabama one of at least 12 states that have passed right to try legislation this year. House Bill 463 and Senate Bill 357 were inspired by 9-year old Gabe Griffin of Shelby County. At age 3, Gabe was diagnosed with Duchenne, one of nine types of Muscular Dystrophy. The disease causes generalized weakness and muscle wasting that increases over time and with muscle activity. Not only is the disease incurable, according to the Muscular Dystrophy Association, boys with Duchenne typically did not survive beyond their teens. Two Alabama lawmakers, Sen. Cam Ward and House health committee chair Rep. April Weaver, agreed to sponsor legislation that would help Gabe and other terminal patients work with their doctors to access medication in the earliest stages of FDA approval. Ward’s bill has already passed the Senate. When he introduced the Senate version of the bill, Ward said in a prepared statement: “Terminal patients should have a right to try, and as a father and an elected official I believe we should do everything we can to help remove unnecessary bureaucratic red tape from the process so that doctors and terminally ill patients can determine the best course of action in each individual situation.” The initial barriers, according to Gabe’s father, Scott Griffin, came from the Food and Drug Administration when the family tried to gain accelerated access to experimental treatments for Gabe. In a recent interview with Alabama Today, Griffin recalled one of his conversations with FDA administrators. “The first argument was that the patient population of one of the studies was too small: just 12 kids. Then they said the results in the study may have been just the natural difference in the disease … They said, ‘Well we have the best drug approval process in the world’ and ‘You have to understand that we have to worry about long-term side effects.’ And I said to them, ‘Explain to me what a long-term side effect is to a child who is going to die.’” The Food and Drug Administration has acknowledged that the accelerated approval process can be daunting for patients and medical providers. In a statement on the FDA website, assistant commissioner Peter Lurie M.D. said that although approvals can happen within days – or even hours – of a finished application, the process has given them cause for concern. “It called for 26 separate types of information and seven attachments,” Lurie wrote. “In fact, it was originally designed for manufacturers seeking to begin human testing, not for physicians seeking use by single patients.” According to Lurie, those concerns are what drove the FDA to announce a new streamlined process to allow patients access to experimental drugs. The FDA website says that the new forms “will be used for requesting the medications, and is designed to greatly simplify and accelerate the process by which a physician can request that FDA permit the use of an experimental — so-called ‘investigational’ — drug or biological product while it’s still being tested to establish its safety and effectiveness.” However, the forms are still going through the administrative rulemaking process and not yet available to the public. The official website gave no indication on when the final guidelines would be available for patients or providers. For the Griffins, the FDA roadblocks helped fuel their decision to lobby Alabama lawmakers. “We believe those drugs could save him, but we can’t get them because they’re not FDA approved,” Griffin said. “And after years of petitioning the FDA, we decided to take our fight to the state level.” The Griffins aren’t alone. According to the National Conference of State Legislatures, a growing number of states are considering legislation to work around those barriers and help patients gain access to experimental drugs. Thursday’s vote makes Alabama one of 12 states that have passed right to try bills so far this year. The NCSL reports that lawmakers in at least 36 states proposed “right to try” measures in 2015.
#Hope4Gabe family excited to see “Right to Try” Act move closer to finish line
One family’s winding journey to secure medicine they hope could save their son’s life is several steps closer to the finish line. A group of Alabama lawmakers voted Wednesday in favor of House Bill 463, also known as the Right to Try Act. The bill says that doctors caring for people with terminal illnesses can prescribe medications that the Food and Drug Administration has deemed promising, but not yet ready for mass consumption. The Griffin family and their son, Gabe, are at the center of the legislation. Scott Griffin and his wife Traci live in Birmingham with their four children: Turner, age 14; Cooper, age 11; and 9-year-old twins, Gabe and Addie. In an interview with Alabama Today, Griffin said he and his wife had suspected since the twins were babies that Gabe wasn’t developing as quickly as his sister. “When you have a twin right beside him and she’s hitting all her benchmarks, and he’s not, it becomes a little evident that something’s not right,” Griffin said. “Our doctors kept saying, ‘Nothing’s wrong. He’s just a boy twin and they’re slower to develop.’ So we just kind of dismissed it. But something didn’t seem right.” The Griffin’s neighbor was the first to suggest that Gabe might need to be tested for muscular dystrophy. An occupational therapist, she sometimes babysat the kids and noticed subtle differences in Gabe’s attempts to stand and walk. She told the Griffins about Duchenne Muscular Dystrophy and recommended that 3-year-old Gabe see a doctor. Duchenne is one of nine types of Muscular Dystrophy. It causes generalized weakness and muscle wasting that increases over time and with muscle activity. The disease primarily effects boys and shows up between ages 3 and 5. According to the Muscular Dystrophy Association, boys with Duchenne typically did not survive beyond their teens. But advances in medical treatments and care have increased their life expectancy: “Survival into the early 30s is becoming more common and there are cases of men living into their 40s and 50s.” Scott Griffin says those medical advances could save Gabe’s life. “He’s 9 now. The typical progression of the disease is that by 10 or 12, they’re wheelchair bound. And then, between 17-20, they usually die.” He says that’s why the family started looking into cutting-edge therapies to slow – or even reverse – the degeneration of Gabe’s muscles. However, the drugs that the Griffins and their doctors feel would help Gabe are still going through the FDA approval process. “We believe those drugs could save him, but we can’t get them because they’re not FDA approved,” said Griffin. “And after years of petitioning the FDA, we decided to take our fight to the state level.” The Griffins started a foundation called Hope for Gabe (H4G) to raise awareness about Duchenne. They also enlisted the help of Michael Staley, former chief of staff to U.S. Congressman Spencer Bachus and current lobbyist at Birmingham law firm Waller Landsen Dortch and Davis, to educate legislators about the proposed law. Two lawmakers, Sen. Cam Ward and health committee chair Rep. April Weaver, agreed to sponsor legislation that would allow doctors to prescribe medication in the earliest stages of FDA approval to terminally ill patients. Sen. Ward’s bill has already passed the Senate. Today, Rep. Weaver’s legislation received a favorable report from the health committee and can move to the House floor for open debate. “Right to Try is the right thing to do,” Weaver said just after the committee vote. “I’m a mother and a nurse with more than 20 years in health care. I believe that anything that we can do to help doctors and terminal patients work together on their plan of care and remove barriers to treatment that might be beneficial is just the right thing to do.” Griffin said that the timing of the legislation is critical to securing medical treatment for Gabe. “Getting him these drugs now means that we can stop the disease before he needs a wheelchair or breathing tubes. They could even turn his condition around.” For Gabe, passing the Right to Try Act means being able to “ride a bike, run, and climb stairs like everybody else.” He said that he’s also looking forward to excelling in his favorite subject in school: physical education. Weaver said she hopes to see the bill head to the House floor by late next week.
House health committee in favor of patients’ “right to try”
Patients in Alabama with terminal conditions may soon have to the “right to try” certain promising medications. A House health panel gave a favorable report to a proposal brought by Rep. April Weaver that would allow doctors to prescribe drugs that the FDA has approved for clinical trials. Companion legislation has already passed the Senate. The legislation was inspired by 9-year old Gabe Griffin of Shelby County. Gabe suffers from an incurable disease called Duchenne Muscular Dystrophy. Duchenne causes generalized weakness and muscle wasting that increases over time and with muscle activity. Gabe and his family were at the committee meeting to hear the vote. Gabe offered a final plea to legislators considering the proposal: “I hope you pass my bill.” The panel passed the bill out of committee by unanimous voice vote.
Poll finds Medicaid recipients still choosing ER visits over primary or urgent care
Medicaid patients are still visiting emergency rooms rather than primary care or urgent care physicians, according to a poll released Monday by the American College of Emergency Physicians. More than half of 2,098 doctors surveyed (56 percent) said that the number of Medicaid patients visiting emergency rooms has increased during the past year. The ACEP poll also reported a sharp increase in the volume of emergency room patients since the Affordable Care Act insurance coverage mandate took effect. About 75 percent of doctors surveyed saw an overall increase in the volume of ER patients; 28 percent reported a significant rise in the number of emergency patients. The study writers said in a prepared statement that the statistics were evidence that efforts by policymakers and health insurance providers to drive Medicaid patients out of emergency departments and into primary care are not working. Those findings arrive at a crucial time in the debate over Medicaid expansion in Alabama. Democratic legislators continue to urge Gov. Robert Bentley to expand Medicaid. Senate Democrats pledged to shut down the rest of the Legislative Session with filibusters on every bill in protest to a resolution passed by Republican leaders opposing Medicaid expansion. Sen. Tripp Pittman, who sponsored the Senate resolution, told Yellowhammer News that he and other leaders harbored deep concerns about raising the number of people receiving public assistance. “This resolution expresses my resolve to be fiscally responsible and protect taxpayer funds,” Pittman said. “Medicaid reform legislation has already been put in place, and we need to measure the outcome of those reforms before rashly expanding Medicaid. Right now, we simply can’t afford to expand Medicaid.”
