“Right to Try” Is a Good First Step, Should Be Expanded

By Anna Mae Kersey

Oregon House Bill 2300 gives terminally ill patients access to potentially life-saving drugs or investigational products not yet approved by the FDA that they might otherwise die waiting for.

While the necessity of such a bill is largely uncontroversial, and since last year more than 20 states have passed similar legislation, restrictions are included in Oregon’s law that severely limit the types of terminally ill patients who would be eligible for this kind of treatment.

As passed unanimously by both the House and the Senate, HB 2300 leaves out children with fatal illnesses and patients in the early stages of cancer or progressive neurodegenerative diseases like ALS, and instead holds them subject to the same restrictions as those seeking “Death with Dignity” or assisted suicide. These patients, who have the possibility of living long and fulfilling lives during which their illnesses might be contained, if not eliminated, are denied this prospect, along with the fundamental human right to care for themselves.

HB 2300 is a good start in the direction of increasing medical autonomy for the terminally ill in Oregon. However, in future legislative sessions the law needs to be expanded so that terminally ill patients seeking to exercise their “Right to Try” are not subject to the same constraints as those seeking the “Right to Die.”

Anna Mae Kersey is a research associate at Cascade Policy Institute, Oregon’s free market think tank. She recently graduated from Mercer University in Macon, Georgia with an Honors B.A. in Philosophy and is pursuing a Master’s of Liberal Arts at St. John’s College in Santa Fe, New Mexico.

Press Release – Oregon Right to Try Bill Unanimously Passes the House and Senate

July 6, 2015

FOR IMMEDIATE RELEASE

Media Contact:

Steve Buckstein

503-242-0900

steven@cascadepolicy.org

Oregon Right to Try Bill Unanimously Passes the House and Senate

PORTLAND, Ore. – Oregon’s Right to Try bill, HB 2300 B, passed 29-0 in the Senate and was re-passed with some restrictive amendments in the House by 60-0 last week. It now goes to Governor Kate Brown’s desk for her signature. The law will give some terminally ill Oregonians the Right to Try experimental drugs and devices not yet approved by the FDA.

Cascade Policy Institute founder Steve Buckstein noted, “The final bill is more restrictive than similar statutes in 21 other states (with its 18-year-old minimum age limit and its six-months to expected death definition of terminal illness), but it’s a good start and hopefully can be expanded in the future to cover children and people who have terminal illnesses such as ALS where patients may live for a number of years.”

Buckstein thanked House Health Care Committee Chair Mitch Greenlick (D), committee member and work group leader Knute Buehler, MD (R), and Senate Health Care Committee Chair Laurie Monnes Anderson (D) for all their hard work on the bill. He noted that these three legislators started working on this legislation before the session even started, and stuck with it all the way to final unanimous passage in both houses.

Buckstein also thanked the Goldwater Institute of Arizona for pioneering the Right to Try concept around the country and for its help in Oregon. He also thanked Diego Morris, the Arizona teenager who had to move to London for treatment approved in Europe but not in the United States when he contracted terminal osteo sarcoma at age eleven. The treatment was successful and Diego is now cancer free. Diego and his mother Paulina visited the Oregon Capitol in February to make their case for allowing terminally ill Oregonians the right to try experimental drugs. When asked by a reporter what he would say to critics of the Oregon Right to Try bill, he looked up at her and said, “Wait until they find themselves in my situation, and then ask them.”

Buckstein concluded, “This truly bipartisan effort resulted in a bill that could literally mean the difference between life and death for some terminally ill Oregonians. I’m proud of the work Cascade Policy Institute did to promote the Right to Try concept and bill in Oregon, and look forward to Governor Brown signing the bill so it can take effect at the beginning of 2016.”

Cascade Policy Institute is a nonprofit, nonpartisan public policy research and educational organization that focuses on state and local issues in Oregon. Cascade’s mission is to develop and promote public policy alternatives that foster individual liberty, personal responsibility, and economic opportunity.

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Oregon Children Deserve the Right to Try

Oregon hopefully will join twelve states that have enacted Right to Try legislation, allowing terminally ill patients to try experimental drugs not yet approved by the FDA.

In several states, the face of Right to Try efforts was a child. Fourteen-year-old Diego Morris was honorary chairman of the Arizona campaign that saw 78 percent of voters approve Right to Try last November. Diagnosed with a deadly form of bone cancer when he was eleven, Diego and his family had to move to London for treatment with a drug approved there, but not in the United States. Now cancer free, Diego visited the Oregon Capitol in February to meet with legislators. When asked what he would say to opponents of Right to Try, Diego answered, “Wait until they find themselves in my situation, and then ask them.”

Five-year-old Jordan McLinn handed the pen to Indiana Governor Mike Pence when he signed that state’s Right to Try law last week. Jordan has Duchenne Muscular Dystrophy, a terminal illness that without experimental treatment may kill him before he turns 20.

No doubt some Oregon children could benefit from the Right to Try. House Bill 2300 would give adults that right, but not children under age 15. Those who favor Right to Try might let their state legislators know that faced with a terminal illness, children should have the same Right to Try as adults do.

Right to Try Is Right for Oregon: Let terminally ill patients try to save their own lives

If you or someone in your family had a terminal illness, would you want the right to try an experimental drug that might save a life? That’s what eleven-year-old Diego Morris of Phoenix wanted when he was diagnosed with a rare, deadly form of cancer. Traditional treatment didn’t work; and after an exhaustive search, his family found a “miracle drug” that was approved in much of the world but not in the United States. So, the whole family moved to England where Diego was successfully treated. Now back in Phoenix, Diego has been cancer-free for two years.

Now thirteen years old, Diego Morris was the Honorary Chairman of the campaign that saw 78 percent of Arizona voters approve a Right to Try referendum last November. It will give terminally ill patients the right to try to save their lives by allowing access to investigational medicines that have not yet been approved by the U.S. Food and Drug Administration (FDA). Diego supported the measure because he said “…hope was the most important thing to him and giving hope to others is what he thinks the right to try law will do.”

Oregon legislators are now being asked to approve Right to Try legislation here. HB 2300 in the House Health Care Committee would not compel physicians or drug companies to provide any treatment; it would simply allow terminally ill patients the right to try to get access to drugs or devices not yet approved by the FDA.

In addition to Arizona, Right to Try laws have been enacted overwhelmingly within the last year by legislatures in Colorado, Louisiana, Missouri, and Michigan. Legislatures in more than twenty states are now being asked to give their citizens this important right.

Designed by the Goldwater Institute in Arizona, the Right to Try concept addresses a growing dissatisfaction with the slow process of approving life-saving medications in America. Creating, developing, testing, and getting government approval to market a new drug here can take upwards of ten years and cost more than one billion dollars. While this process may keep unsafe or ineffective drugs off the market, it may also keep effective drugs away from critically ill patients for so long that they literally die waiting.

Only about three percent of the sickest Americans qualify for or have access to FDA-approved clinical drug trials, and even those who enter such trials cannot be sure whether they are receiving a potentially useful drug or a placebo. Some medical researchers worry that granting terminally ill patients the right to try investigational medicines may make it harder to recruit people for randomized controlled trials. However, more and more people now recognize that an individual’s right to try to save their own life should trump the need that researchers might have to control how those drugs are tested.

As Goldwater Institute president Darcy Olsen says, “Terminal patients shouldn’t have to ask the government for permission to try to save their own lives.”

While the FDA does allows people to request access to medicines that have not yet been approved, the process can require 100 hours of paperwork and months to complete, with no assurance that access will be granted. Currently, fewer than 1,000 individuals get such approval annually. Right to Try offers a better way.

Some legal scholars worry that the federal government will challenge state Right to Try laws under the Supremacy Clause of the U.S. Constitution, which says that when federal and state laws conflict it is federal law that should take precedence. While this is often the case, Oregon is in the forefront of what could be a very relevant exception.

Oregon voters twice approved the state’s controversial Death With Dignity Act, in 1994 and again in 1997. The law allows “terminally-ill Oregonians to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose.” The medications, however, are deemed controlled substances by the FDA and not federally approved for such a purpose.

The U.S. Attorney General argued that because federal law prohibited controlled substances from being used to intentionally end life, the Courts should strike down the Oregon law. The U.S. Supreme Court disagreed. In Gonzales v. Oregon (2006), the Court upheld Oregon’s law. It found that states generally have wide discretion in regulating health and safety, including medical standards. Finding that the Bush Administration’s reading of the federal statute would mark “a radical shift of authority from the States to the Federal Government to define general standards of medical practice in every locality,” the Court ruled that Oregon could protect the rights of its citizens, at least in this specific instance.

If Oregon can protect the right of its citizens to end their own lives with controlled substances, it should be able to protect the right of its citizens to try to save their own lives with substances not yet approved by the federal government.

As thirteen-year-old cancer survivor Diego Morris believes, Right to Try can offer hope to people facing life-ending situations when federal law offers no hope. It’s a policy whose time has come, and Oregonians deserve.

Right to Try is right for Oregon.

Shouldn’t the Terminally Ill Have the “Right to Try” to Save Their Lives?

By Matthew Hayes

Last Friday, Michigan approved Right to Try legislation with overwhelming bipartisan support. Colorado, Missouri, and Louisiana all passed similar measures this year, with Arizonans voting on the issue this November. What is Right to Try and why is it gaining steam?

Spearheaded by the Goldwater Institute, an Arizona-based public policy organization, Right to Try legislation allows terminally ill patients access to drugs, biotics, and implants that have completed basic FDA safety testing but are still awaiting further approval.

The FDA offers a similar program, known as Compassionate Use. Unfortunately, the process isn’t easy. Physicians typically face 100 hours of paperwork and research per applicant. The entire process can take several months, a luxury many terminally ill patients don’t have.

These costs are seen in the usage statistics. In 2011, fewer than 1200 patients received expanded access, while more than 1500 people died of cancer each day. Right to Try legislation removes many of these barriers, making the process easier and faster for patients. While it can’t be known how many lives these save, the number is undoubtedly greater than zero.

Since 1997, the Death with Dignity Act gives terminally ill Oregonians the right to end their lives. Bringing Right to Try to Oregon offers these citizens the chance to do more than just hasten death; it offers a chance to beat their illness.

If you have the right to die, shouldn’t you have the right to fight to live?

Matthew Hayes is a research associate at Cascade Policy Institute, Oregon’s free market public policy research organization.