Hope or Hurt: Right to Try Legislation

Hope or Hurt: Right to Try Legislation

When many patients with incurable conditions reach a certain point in their battles, it becomes necessary to find hope in any way possible. It’s easy for us to say, “cheer up” or “focus on the good things.” However, sometimes, when people confront their medical situations, they need more definitive assistance. For this, a new and improved medication/therapy routine is a really good place to start making a difference in their quality of life.

If we had an infection, we could take penicillin. With Parkinson’s, we can take a variety of medications to promote dopamine flow, either real or synthetic. From my own personal experience, I take Azilect, which is an MAO-B inhibitor. I also take the anti-viral/dopamine promoter Amantadine. These are my Batman and Robin of fighting tremors and cognitive woes.

Generally, they’re a good combo for keeping me “Dan” for as long as possible.

Granted, I’ve had to stop taking some negative medications. With where my current medications are in my treatment plan, I’m OK with them until I get to levodopa/carbidopa. When I need to switch to levodopa/carbidopa, I’ll be on that process for the long haul. Yes, at some point I will need greater doses while I move up the 5 stage scale to the middle and late stages (I’m in stage 2 now). Until then, I’ll be in Parkinson’s standard hope and treatment track.

Nevertheless, all nasty diseases make people scared. With Parkinson’s deep brain stimulation is something that unnerves us since it involves surgery on the very motor that makes everything we do possible. For me, this is one of those real-life monsters that hover in the distance scaring me (and yes, I’ve watched the video of it being done – trigger warning). Despite this, I know DBS works and can Parkies tremendously. Thus, I/we can eliminate some of this fear by talking to other people or checking out the link above.

The new law in town

Still, it may not be the last or best solution. That “miracle” may be an experimental medication that is still in trials or early stages of development. Last May, President Trump signed a bill that Republican Ron Johnson of Wisconsin presented when he recognized this need. While not universally approved, this gives many patients a fighting chance. With conditions like Lou Gehrig’s disease and cancer, more people would feel a greater hope with experimental medicine.

The key here is that this medication is for a “life-threatening disease or condition.” The patient must also have “exhausted approved treatment options and is unable to participate in a clinical trial.” Another catch is that the company doesn’t have to give the medicine. However, if it does, it protects them and the hospital from legal consequences if prescribed and given within medical standards.

The voice of dissent and worry

The big fears of this legislation is that hucksters might give “snake oil” to patients. If the Food and Drug Administration isn’t regulating these things, more issues of questionable validity may occur (like those with  vitamins/supplements).

While the trial medication must clear phase 1 of its study, this only requires a relatively small sample size. What’s more; it would not have gone through longitudinal studies where later side effects may appear.

Didn’t this exist already?

To some degree, there were laws in 38 states, but now the law covers all of America. There are catches though. People have to be ineligible for or unsuccessful at trials. For those people who don’t know, there are many medical studies available through Michael J. Fox Foundation. Additionally, it was estimated by Forbes Magazine that 99% of experimental medication requests are already approved.

However, by mandating this, lawmakers feel that people with extreme health issues will have hope where they had none. Also, the pharmaceutical industry will generate more studies to validate and expedite the medication approval process.

Controversial

As with all laws, not everyone endorses the right to trial medication law. Only you can make the final decision. If you find yourself in need of any therapy/medicine, you should talk with your caregivers/family. Additionally, you should see a doctor and research it at a science-based website or through a reputable organization. Remember, it’s your life, and this, like all medicines, could impact the quality of your life after taking it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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