Call to Action: Ways Patients Can Have an Impact on Healthcare

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Topics include: Financial and Insurance

How can patients get involved in policy-making? John Wylam, from Aimed Alliance, discusses opportunities for people to get engaged, make their voices heard and speak on health care issues they’re passionate about. John also shares resources for patients and families living with cancer to stay up to date with legislative developments in healthcare. Watch now to find out more.

This is an Aimed Alliance program produced by Patient Power. We thank AbbVie Inc. for their support. These organizations have no editorial control.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:        

What can we do, John? So, how do we tell Medicare or a Congressman, “Hey, this affects us, and we care and please help us we access to the medicines we need and deserve in a financially affordable way,” or at the state level, what do we do? 

John Wylam:             

Of course. So, you can always get more involved. These issues are prevalent in every state, and if you're passionate about them, you can get engaged with your state-elected and federal representatives to make your voice heard by sharing your story. Some issues may only be handled by state legislators, while others are exclusively handled by Congress or a regulatory agency. So, you might need to do some light research to figure out who the appropriate policymakers are before reaching out to anyone directly. 

But also, state and federal legislators often hold hearings when they’re considering these issues, so you can do some research to find if your state will be holding a hearing on a topic you are passionate about in the near future, and you can work with the members of the committee that are holding that hearing. You may be permitted to testify before the committee to support or oppose legislation that they’re considering. But more than that, state and national patient advocacy organizations often have great connections with legislators, and they may be able to help you in this regard. 

So, it could be helpful to find an advocacy organization that aligns with your values and start working with them on these issues. And if you’re unable to attend a hearing in person, you can always write a letter to the members of a committee. You can also write letters to legislators who are not even on that committee to urge them to support or oppose legislation when it comes to a full floor vote. So, also, don’t just assume your voice and your vote don’t count. 

In my previous life as a lobbyist, I personally heard from congressional offices that they sometimes have to hand count how many people actually call in to support or oppose a specific issue, and the member’s vote isn’t decided until the moment their vote is cast. So, you could be the deciding factor for your member of Congress. You can have an even greater impact on the state level where your unique perspective could really make a difference. So, to stay ahead of things you’ll need to pay close attention to current developments in Congress as well as your state’s legislature. 

To stay up-to-date on activities of your state’s legislature I’d recommend subscribing to a local political publication that reports on legislation matters. If you know that a specific legislative committee will handle matters that you’re passionate about, you can likely subscribe to updates from that committee to receive notice whenever hearings are scheduled. And considering subscribing to a national publication as well. I often rely on these to provide easily digestible summaries and developments currently before Congress and many other federal regulatory agencies. 

So, I’d recommend Kaiser Health News, Health Affairs, and the Commonwealth Fund among others, as good examples of reputable sources I often rely on. And they will often issue reporting on state issues as well, so…I just wanna wrap up by saying that, also, if you're interested in the issues that we work on, you can visit our website at aimedalliance.org and you can also subscribe to our newsletter where we provide monthly updates on these issues. 

Andrew Schorr:        

Okay, and we’ll put all that on the screen and we’ll continue our dialogue with our viewers about all of this. John Wylam from the Aimed Alliance, staff attorney there with your—really taking the temperature of what’s going on in the states and the federal government. Thank for looking out for us, John. And we’ll continue our discussions with our “ABCs” program. Also, I just wanna mention, John, just briefly a big other issue going on is keeping our health information private.  

There’s been a lot of work on that in Europe and that’s other discussion in the U.S. So, John, we’ll have another program with the Aimed Alliance specifically to talk about protecting our privacy of our health information. 

John Wylam:             

Looking forward to it. Thank you for…

…having me here.

Andrew Schorr:        

Thank you for being with us. I'm Andrew Schorr, thanks to the Aimed Alliance and our partnership with them. And as I like to say, remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on June 26, 2019