As rare disease patient advocates, we understand first hand how devastating a terminal illness is to a patient and family. When it comes to proposed Right to Try legislation, we fully agree that patients’ lives need to be extended through early access to potentially life saving medication. However, unlike the views expressed by Right to Try proponents, as seen in Kyle Burgess’s opinion piece, we know that Right to Try is not the answer.

It is because we advocate on behalf of patients that we need to address the dangerous misconceptions and half-truths touted by the Right to Try movement, which is backed by a libertarian think tank, The Goldwater Institute. While Goldwater has done a marvelous job of promoting Right to Try laws as the last chance for patients to “get immediate access to medical treatments they need before it’s too late,” the cruel reality with this legislation is that it will not achieve what it purports to do.

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When it comes to access to potentially life-saving medications, we must not lose sight of who we should all be here to protect: patients. Burgess suggests that Right to Try bills contain two primary components: preventing the federal government from restricting experimental treatments to treat a terminal illness, while protecting drug makers from consequences in the case of adverse events. The oversimplification of what this inherently flawed legislation entails is offensive to patients, the government, and drug manufacturers.

Burgess writes that, for “the loosening of regulations to incentivize drug makers” to partake in Right to Try, these companies need to be insulated from litigation or “punishment for trying to help.” The FDA drug approval processes, which include clinical trials to measure everything from dosage, to efficacy, to safety, aren’t in place to “punish” drug makers. They are in place to protect patients.

Ethically, the push for FDA deregulation will hurt no one except patients. If adverse events are caused by a drug, the public should have this information available. If a patient is to make an informed decision whether or not to take a drug, why keep this knowledge from the very people a drug is designed to help? Right to Try hopes to grant immunity to drug prescribers and sellers from liability – even if they behave with gross negligence, or administer a device without the patient’s informed consent.

While Right to Try proponents insist that drug manufacturers are reluctant to provide drugs under the FDA’s Expanded Access program for fear of repercussions associated with adverse events, the FDA publicly states that such events should not impact a drug’s approval. In conversations with companies that develop, test and market rare disease treatments, the worry of consequences of adverse events persists with Right to Try.

Pharmaceutical companies may not have to report adverse events to the FDA under Right to Try, but the fear that one could derail a drug’s approval process remains. Adverse events have a good chance of being reported in the media. For companies that sell stock equity, the U.S Securities and Exchanges Commission requires the reporting of incidents that may have bearing on the success or failure of development of the investigational drug. Such communications frequently find their way from shareholders to the general public.

Right to Try rhetoric relies on scapegoating the government as the barrier to patient access. Yet, the FDA’s Expanded Access program approves over 99 percent of applications it receives. However, before the FDA can even see a patient’s application, the drug manufacturer has to first agree to provide the patient with the drug. And therein lies the crux of the challenge in accessing investigational drugs — for both Expanded Access and Right to Try.

Right to Try legislation leaves drug access to the discretion of pharmaceutical and medical device companies; neither proposed federal bill requires companies to make their products available to patients. Though Right to Try laws have passed in 34 states, there is no evidence of a patient ever receiving a life-saving medication under the laws that they otherwise wouldn’t have through the FDA Expanded Access program. Over 238 million Americans live in states with Right to Try laws — but the legislation has done nothing to encourage drug manufacturers to increase access to drug requests.

As patient advocates, we know that Right to Try laws can’t and won’t help our loved ones fighting for their lives. What supporters promote as a beacon of hope does nothing to change the reality for patients in need, and nothing to encourage drug manufacturers to make their investigational drug available.

We urge congress to vote against Right to Try and instead focus on measures that will provide real, tangible solutions — not empty promises of “immediate access” — to patients in serious need.

Andrew McFadyen is the Executive Director of The Isaac Foundation and a member of the NYU School of Medicine’s Working Group on Compassionate Use and Pre-Approval Access. Alexandra Hall is the Managing Director and Policy, Patient Support, & Industry Liaison of The Isaac Foundation.

The views expressed by contributors are their own and are not the views of The Hill.