After years of advocating for increasing patient’s freedom to access treatments that may save their lives choice President Donald Trump signed into law the Right to Try Act (RTT). Thankfully, RTT allows people with life-threatening diseases or conditions who have exhausted FDA-approved treatment options to finally access drugs still undergoing clinical trials. The trial drugs still must pass initial safety tests but do not have to complete the decade-long approval process before becoming accessible to patients thanks to RTT.
Heartland Institute President Dr. Tim Huelskamp was present at RTT’s signing ceremony, along with Senator Ron Johnson (R-WI) who was the bill’s primary sponsor and champion. When the Trump administration reached out to Dr. Huelskamp earlier this year for possible policy objectives, Huelskamp suggested RTT, which Trump mentioned positively during his State of the Union Address.
Widely supported by Americans across the political spectrum, RTT legislation has already passed in 40 states. The Right to Try Act mirrors the state-level laws, both of which were crafted by the Goldwater Institute who has led the national RTT effort. The latest state to pass this commonsense legislation is Rhode Island, where Neil Fachon, a 20-year-old student, was diagnosed with an aggressive pediatric brain stem tumor and had to go to court to access a trial drug the FDA halted in clinical studies. Although Fachon eventually got access to the investigational drug, it was too late. Fachon died almost a year after the diagnosis.
Similar stories of patients with life-threatening conditions having to go to extreme measures simply to obtain a drug or treatment that could potentially save their lives are far too widespread. For example, some patients have had to go to court to access drugs, travel to another country to get non-FDA-approved treatments, or create their homebrew versions of investigational drugs. These unnecessary obstacles terminally ill patients face have generated understandable outrage over the bottleneck drug-approval process that gives the FDA monopoly control over which drugs become available to patients. The drug-to-patient pipeline has become clogged with unnecessary rules and restrictions—resulting in a process spanning more than a decade. Even the most promising drugs cannot be streamlined and must adhere to the overly rigorous three-phase clinical trials, not to mention the preclinical trial phase, which typically takes up to six years.
Some critics of RTT are worried that experimental drugs may accelerate patients’ symptoms. However, not allowing terminally ill patients to take experimental drugs essentially guarantees the patients will pass away within the estimated time frame. Drugs still undergoing clinical trials could extend the lives of these patients, giving them and their loved ones a renewed sense of hope.
With the passage of the Right to Try Act, Americans have more autonomy in making important health care decisions that often make the difference between life and death. Policymakers should weigh the risks and rewards of increasing patients’ access to clinical trial drugs. Legislators in states without an RTT law should continue to push for one at the state level. The passage of RTT is not the end but rather the beginning of an era in which patients finally have access to the newest life-saving drugs sooner and at a lower cost. The Heartland Institute is building on RTT’s momentum by promoting an even more robust agenda to increase patients’ freedom: Free to Choose Medicine.
What We’re Working On
Education
New Report Details the Prevalence of ‘Charter School Deserts’
In this Research & Commentary, Policy Analyst Tim Benson details a new report from the Thomas B. Fordham Institute that details what it calls “charter school deserts” and how certain high-need neighborhoods, particularly low-income suburban and rural areas, are being underserved by charter operators, thanks in part to policies that bar their entry or make opening a school onerous. To remedy this situation, the authors suggest charter operators widen access to school choice in urban communities but also in the inner-ring suburbs, smaller cities, towns, and rural areas. At the same time, state and local policymakers need to relax laws and policies that limit charter operations and undo unequal funding formulas.
Energy & Environment
USGS Forecast Notes ‘Rapid’ Decrease in Oklahoma Earthquakes
In this Research & Commentary, Benson writes about the U.S. Geological Survey’s (USGS) latest annual forecast for induced and natural seismicity for the central United States, which concludes the number of magnitude-3.0 and greater earthquakes on the moment magnitude scale have been declining rapidly in Oklahoma since 2015, when lawmakers reduced the volume in wastewater disposal wells. Benson argues that sensible precautions such as those taken in Oklahoma can reduce the risk of increased induced seismicity. In many cases these precautions are already being taken by drillers without any government mandates.
Health Care
Direct Primary Care, A Viable Solution to Pennsylvania’s Primary Care Shortage
In this Research & Commentary, Senior Policy Analyst Matthew Glans examines new legislation in Pennsylvania that would help open the door for direct primary care providers. “Pennsylvania should remove unnecessary regulatory barriers to direct primary care, thereby revitalizing the state’s floundering health care system,” wrote Glans.
Budget & Tax
Vermont’s Vaping Tax Will Stifle Tobacco Harm Reduction
In this Research & Commentary, State Government Relations Manager Lindsey Stroud argues against a proposal in Vermont that will impose a 46 percent wholesale tax on the liquid used in electronic cigarettes. “Rather than imposing draconian taxes on products that have aided thousands of smokers with quitting combustible tobacco cigarettes, Vermont lawmakers should promote the use of electronic cigarettes and vaping devices,” wrote Stroud.
From Our Free-Market Friends
NAEP scores tell us something, but not everything
Elyse Marcellino of Empower Mississippi, a non-profit dedicated to expanding education choice, discusses the latest National Assessment of Educational Progress (NAEP) results for Mississippi children in 4th and 8th grades. The state has done better in the last round of NAEP testing than ever before. The state is ranked 2nd and 4th in the nation for gains in 4th grade reading and math, respectively. The scores for 8th grade reading increased slightly between 2015 and 2017. Although these gains in education should be celebrated, Marcellino recommends pushing for more education choice in the Magnolia State, such as expanding Education Savings Accounts already in existence.
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Arianna Wilkerson worked in government relations at The Heartland Institute from 2017 – 2019.
