Don't Curse the Nurse!

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The ‘Right to Try’

on June 9, 2018

dangling carrot

Get a drink. Sit down and get comfortable.

Alabama, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Idaho, Illinois, Indiana ,Iowa, Kentucky, Louisiana, Maine, Maryland, Michigan,   Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire,  North Carolina, North Dakota, Ohio,  Oklahoma, Oregon, Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Washington, West Virginia, Wisconsin, and Wyoming.

If you live in any of these states, you can now try Experimental drugs that have only completed Stage I of the FDA review program (proof the medication will not poison you).

The federal ‘Right to Try’ bill first passed the House of Representatives on March 21st   then moved on to the Senate. The bill grants permission to try to get experimental medication directly from a pharmaceutical company. The Americans for Prosperity, backed by conservative billionaires Charles and David Koch, supported and pushed for passage of this bill. They gave millions in support of candidates in the 2016 elections and have given more than $100 million to conservative groups.

The Senate passed it on May 22nd then moved it to the President’s desk.  He had previously endorsed it in his January’s State of the Union address, saying, “People who are terminally ill should not have to go from country to country to seek a cure – I want to give them a chance right here at home.”

Dr. Scott Gottleib, the commissioner of the U.S. Food and Drug Administration (FDA)  expressed his concern about the bill in the past, but stated he would embrace the changes.

Groups representing patients and research groups opposed the initial House bill as unsafe. In a letter Tuesday over 100 of them said the final legislation is worse. Patients would be allowed to try experimental drugs, but nothing in the legislation would make it mandatory for pharmaceutical companies to dispense these medications, assist with the inflated cost, or have any responsibility if the drug resulted in side effects needing additional medical follow up.

“The vast majority of experimental drugs ultimately fail: FDA estimates that for every 100 drugs that enter the first phase of human testing, only five to seven will eventually get approval. The other 95 percent either didn’t work, or had risks that outweighed their benefits, and any patients who took them on an ‘experimental’ basis would have suffered pointlessly.”

The bill only removes legal roadblocks.

Now, the FDA already has a program in place designed to provide patients with experimental medications.

This program, known as the “compassionate use” program, performs essentially the same function as the right to try legislation, allowing patients to try experimental drugs after approval from a review board and panel of experts. In recent years, the FDA has approved 5,816 of 5,849 requests — a 99.4 percent approval rate.

The average American, and I’m not talking about those that lean heavy on current federal programs , I’m talking about those that have tenure, have thousands in their pension plan, lived at the same address for forty years, raised their kids, or are working overtime to set up college funds, won’t benefit.

These people get that devastating diagnosis of ALS or M.S., turn around, take out a second mortgage or move in with their parents or kids in order to pay the difference insurance doesn’t cover for home therapies, medical equipment, and a list of other things.

This bill does not make it mandatory for a company to hand out experimental drugs.

It gives hope to the rich, the very rich.

Insurance companies? They’re not in this conversation because, well, they’re not leaning in that direction. Every year they expand the list of FDA approved medications and surgeries that need pre approval. I don’t see anyone asking insurance carriers to glove up and get in the ring.

Our Chief Executive Officer of the US of A, has trimmed the Medicare budget and is encouraging the House and Senate to complete cuts in the Healthy Start program (For Pregnant mothers, and Children)

This will be touted as a success, a win for the people. I think it’s a ruse.

Hope shouldn’t be toyed with. It’s cruel to put a plate of food in front of a man with no hands, then walk away.


USA Today , May 2018

Morten Wendelbo, Timothy Callaghan The Conversation May 30, 2018, CBS News

7 responses to “The ‘Right to Try’

  1. Jackie says:

    Bravo!! Thank you for your honesty and viewpoint from a medical worker. I was appalled when I read this was going to go into effect.

    • Susan says:

      I can only hope people aren’t distracted by the ‘Bells and Whistles’ bravado by which this is going to be presented in the media. I hope everyone reads the fine print.

  2. Elaine VonRosenstiel says:

    Yes, Bravo! Thank you, Susan, for taking the time to describe this legislation and help us all better understand what it does — and mostly doesn’t — do.

  3. Beth says:

    My hope is that little-by-little, we can cut the middle man in the drug business who is getting filthy rich and really does nothing but sell.

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