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“Done and done”

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Illinois

* A text message from Rep. Greg Harris…

Mike Connelly suggested I send you this from your January 30 “It’s Just A Bill” section which was listed as “A good idea but it’s gonna take a whole lot of work and attention to details”. Done and done

* From that post…

* Press release…

In an effort to give terminally-ill patients access to clinical-trial, experimental medical treatments, the bipartisan duo of State Sen. Michael Connelly (R-Lisle) and State Rep. Greg Harris (D-Chicago) are seeking to bring “Right to Try” to Illinois.

If passed, Senate Bill 29 would make Illinois the sixth state in the nation to pass this potentially lifesaving access to experimental medical treatments. Arizona, Colorado, Louisiana, Michigan and Missouri have pass the initiatives either through their legislatures or through referenda.

“It is incumbent upon us in the General Assembly to provide our constituents afflicted with terminal illness access to potentially life-saving or life-extending medications that have been deemed safe by the FDA. This legislation does just that,” Connelly said.

“I hope this shows that in Illinois, Republicans and Democrats, social liberals or social conservatives, can reach across the aisle to solve problems for suffering families. These families are desperate to cut through red-tape to access possible cures for their loved ones when all other treatments have failed.” Harris said. “‘Right to try’ is a huge leap forward to help connect our state’s most terminal patients with some of the nation’s best medical resources, including those here in Chicago and give them the gift of life.”

* And this is what Rep. Harris sent today…

Nice job, guys.

posted by Rich Miller
Wednesday, Aug 5, 15 @ 10:09 am

Comments

This is just a great idea and I hope it can become law.

Comment by The Dude Abides Wednesday, Aug 5, 15 @ 10:13 am
Greg Harris the best, if all Members were as diligent and policy oriented as him, our State would be so much better.

Comment by Just Me Wednesday, Aug 5, 15 @ 10:14 am
Dude, I thought it was clear. The governor signed the bill this very morning.

Comment by Rich Miller Wednesday, Aug 5, 15 @ 10:15 am
Is Rauner checking his watch in that photo?

Comment by Tournaround Agenda Wednesday, Aug 5, 15 @ 10:16 am
Posts like this are a good reminder that none of our politicians are as evil as some in each party, and sometimes comments, want us to accept. That includes everyone from Rauner and Madigan through the newest members.

Kudos to all.

Comment by Formerly Known As... Wednesday, Aug 5, 15 @ 10:16 am
Do insurance companies have to provide coverage for yhe treatments under this law? I seem to recall Penny Severns ran into an issue where she had access to the experimenal treatment but the insruance company refused the 6 figure per treatment cost.

Comment by Ghost Wednesday, Aug 5, 15 @ 10:16 am
Mike Connelly couldn’t send it himself? only kidding

Good job by both.

Comment by walker Wednesday, Aug 5, 15 @ 10:17 am
Sometimes government actually amazes you by doing something that’s downright common sense.

Good work! Thank you.

Comment by Streator Curmudgeon Wednesday, Aug 5, 15 @ 10:27 am
At times the legislative process does work and necessary and long overdue and needed issues are addressed. Thanks to all involved.

Ghost does have a good point, but I guess the devil is in the details.

Comment by illini Wednesday, Aug 5, 15 @ 10:32 am
Rich, maybe Dude thought Rauner was making Harris and Connelly watch as he drew pictures demonstrating his turnaround agenda.

(Just kidding with you Dude.)

Comment by Norseman Wednesday, Aug 5, 15 @ 10:37 am
Without a requirement for insurance companies or Medicaid to cover experimental treatments, this probably won’t help the majority of people who could otherwise benefit. Unless the manufacturer has an incentive to provide the treatment at no or reduced cost, this law will only help those who are able to pay.

Comment by Fun with Numbers Wednesday, Aug 5, 15 @ 11:15 am
== Unless the manufacturer has an incentive to provide the treatment at no or reduced cost, this law will only help those who are able to pay. ==

Sometimes the incentive is the manufacturer’s ability to collect trial data in the hope of positive results and support for getting the drug / procedure approved.

Comment by RNUG Wednesday, Aug 5, 15 @ 11:19 am
Thanks Numbers and RNUG - my suspicions as well.

This is long overdue and does offer some options for those who may be willing to participate, but Medicare and the supplemental carrier may still present some obstacles.

Comment by illini Wednesday, Aug 5, 15 @ 11:40 am
I may not have time to dig into this more until this evening, but if this bill is what I think it is, it may be a very bad idea. Google “right to try” and noodle around critical hits.

Similar laws explicitly allow insurance companies to deny coverage of the drugs, as well as any complications that may result. They also block any ability to sue. They seek to open up drugs in phase I trials which means the safety of the drugs is practically unknown (we’re talking short trials with a few dozen patients here), and the fact that you’re terminally ill does not mean you cannot be badly harmed by a drug. And ultimately the bills have no actual effect because the states have no ability to make these drugs available; that is the FDA’s call. As far as I can tell, no one has gotten access to anything through these state laws.

And unfortunately, it may be very political: Similar laws follow a template written by the Goldwater Institute, a libertarian think tank. The implication is that this is part of an effort to undermine the FDA’s review and approval process.

Comment by Threepwood Wednesday, Aug 5, 15 @ 11:59 am
RNUG they never have a shortage of volunteers…. Thats why the need for the bill… You no longer have tonwin the vlunteer lottery to get access to the drugs. Taking the drugs outside of the controlled trial gives no statistically useable info…. No control grp etc.

Which is why i raised the payment issue access to the drugs is good, but for most the cost and lack of insurance coverage for wxperimental treatments means they wont actually have access.

Comment by Ghost Wednesday, Aug 5, 15 @ 12:00 pm
I agree with Threepwood. See https://www.sciencebasedmedicine.org/the-con-game-that-is-right-to-try-legislation-continues-to-metastasize/

and

http://www.yalelawjournal.org/forum/right-to-try-unapproved-drugs .

Same conclusion - this can’t really be done at the state level, so the goal is to get states to build pressure upon Congress to undo the regulation of new drugs by the FDA, which I guess sounds good to a libertarian think thank, but not to anyone who puts patient safety ahead of ideology.

Comment by Rasselas Wednesday, Aug 5, 15 @ 12:02 pm
It also has the feel of deja vu. The last time politics overtook science in the treatment of cancer was for autologous bone marrow (stem-cell) transplantation and breast cancer. If you were around in the 90s, you’ll recall the populist push by legislators to force insurance companies to cover the procedure, even though it was ‘experimental’ and hadn’t gone through all the FDA approval processes. The rhetoric was the same - let patients decide - and the result was a disaster - a book has been written on the topic, “False Hope” - see http://www.nejm.org/doi/full/10.1056/NEJMbkrev58584

Comment by Rasselas Wednesday, Aug 5, 15 @ 1:04 pm
“Without a requirement for insurance companies or Medicaid to cover experimental treatments, this probably won’t help the majority of people who could otherwise benefit. Unless the manufacturer has an incentive to provide the treatment at no or reduced cost, this law will only help those who are able to pay. ”
Why does this new law exclude any requirement for insurance companies, Medicaid or Medicare to cover experimental treatments?

Comment by Mama Wednesday, Aug 5, 15 @ 1:25 pm
Mama - agreed!

Granted there are other considerations and consequences - I’ve been reading some of the links posted on this thread.

Still think this is a good idea, but am having a few reservations.

Comment by illini Wednesday, Aug 5, 15 @ 1:35 pm
Yeah…that does ring a bell.

What galls me about this one is the political aspect. This is, essentially, a cynical attempt to exploit terminally ill patients and their friends and families as tools to water down the FDA and protections of those patients’ health, finances and even rights. The things “right to try” claims to offer, and can’t, are already offered by the FDA compassionate use process. Which probably needs to be faster…but works. The key difference is this puts everything on the patient; cost, liability, etc. It even blocks the state from going after doctors that misuse “right to try”, such as recommending treatments they should have known were inappropriate for that particular patient, or by using it as a cover for recommending quack remedies.

Parts of this ARE a good idea, which is why Compassionate Use already exists. Basically, most of what these bills claim to do is already done. What it adds is the removal of things like insurance and medicaid coverage, and the piling of liability on the patient. They’re not trying to help patients; they’re trying to gut the FDA.

Comment by Threepwood Wednesday, Aug 5, 15 @ 1:46 pm
This discussion is going in a direction I did not think it would - and I may be having a few reservations or concerns as well - but still think this is fairly good bi-partisan legislation.

Comment by illini Wednesday, Aug 5, 15 @ 2:47 pm
Despite the naysayers on this post, I am delighted by the bipartisan approach. Opponents had time to register their concerns. Connelly and Harris are no dummies and are unlikely members of a plan to gut the FAD.

Hats off to both of them. May they continue working together.

Comment by Last Bull Moose Wednesday, Aug 5, 15 @ 5:18 pm
You could be entirely right…and still be wrong about the intent and effects of the bill. Everything about it is crafted to sound wonderful…as long as you don’t look too close. Who could possibly object to dying patients being allowed to pursue their last, best hope? Most people don’t know what it actually says, or what it’s actual effects are. It’s entirely possible the sponsors didn’t either. But I wouldn’t be proud of passing a bill I failed to Google, and I’m not so naive as to assume they absolutely didn’t.

I can’t congratulate anyone for bipartisanly passing a bill that does nothing, but that eventually may undermine patient health, rights and economic security in the name of political ideology.

Comment by Threepwood Wednesday, Aug 5, 15 @ 6:21 pm