This isn't my standard blog material, but it is INCREDIBLY IMPORTANT.
S. 1674 is a bill designed to help improve access to clinical trials for rare diseases. (Much as the title suggests)
Who, What, Why, in layman's terms:
Clinical trials establish the safety and effectiveness of new treatments so that they can gain FDA approval and then be distributed to patients who need them. When a disease is rare, the trials automatically start with a smaller quantity of patients able to participate. Finding patients who are willing and healthy enough to participate in these trials becomes a challenge.
When a patient participates in a clinical trial, they may have to miss work, travel, or do other things that cost them money. The trials pay a small fee to participants to help them recoup some of these losses.
Many, if not most patients with rare diseases need assistance funding their (very, very costly) ongoing medical care. Programs like Medicaid can be a lifesaver to these patients and their families. Medications for these patients can cost tens of thousands of dollars a MONTH. In our case, Jackson has some medications that would cost about $400 a month, and one that would run us $2000 a month out of pocket. That's just TWO of the meds he needs. The private insurance available to us would cost over 1/3 of our annual income before it would cover ANY of our expenses. Having Medicaid means we don't have to choose between paying rent and getting Jackson his medications.
So what's the problem? There are rules and limitations to qualify for Medicaid. There are income guidelines you have to meet in order to get assistance. As it stands now, money gained from participating in Clinical Trials is considered supplemental income. Patients are being disqualified for Medicaid because of the fees paid by Clinical Trials. Of course, when the ultimatum between medical coverage and ability to participate is presented, Clinical Trials suffer greatly, and the field of potential participants is narrowed even more.
In order to advance research, treatments, management, and cures for these diseases, Clinical Trials must be available to the greatest possible number of participants!
S 1674 wants to exempt income (the first $2000 per year) gained from participating in trials from being counted towards income guidelines for Medicaid. This will increase the number of patients able to participate in clinical trials, making them more effective, and hastening the advancement of treatments and disease management.
Help get S 1674 passed. You can start by writing your state representative to ask them to sponsor the bill. IF you don't know who your representatives are, finding out is as easy as clicking HERE . The site also has contact information for all your current officials.
What to do:
You can use this letter to ask your representatives to sponsor the bill. Just a copy/paste email will work, or you can include your personal story or connection to rare diseases and the need for greater access to Clinical Trials. You can forward it to friends and family and ask them to do the same. The more requests they get from their constituents, the more likely they are to sponsor the bill.
You can track the progress of S 1674 HERE . You can see if your Reps have co-sponsored or if you still need to raise awareness in your area.
You can organize visits to your representatives in person to lobby for S 1674.
You can link or copy this blog to any site you'd like to help spread the word. We need all the help we can get. (Also, should you spot any missing or incomplete information here, please let me know so that I can give the most accurate info possible!)
You can reach me here, by email at firstname.lastname@example.org, or on Twitter as @FindingThetis . Thank you for crusading with us!