Welcome Packet

Welcome and thank you for your expressed interest in 50-State Network, an important initiative of the non-profit Global Healthy Living Foundation. This program is now in its fifth year, and the network is growing, thanks to folks like you who have come forward to help.

Here are a few next steps to ensure that you’re a proper member of our strengthening network. You don’t have to do everything at once, and you may want to save/flag/print this page to come back to later, as there are a few immediate requests, and just a little homework for you.

Advocating to improve our healthcare system, either nationally or within each of our states (where a lot of the health policy that impacts us is determined), means sharing your perspective, sharing your voice, sharing a small part of your limited energy, all while using the tools and resources that the 50 State Network has developed especially for you. We are here to hold your hand. And we know how delicate the hand can be.

Together we will carry our collective messages to the masses, to our lawmakers, to our regulators, to corporations, and to others who have influence over the access to care that we deserve.

OK, it’s time to get started:

There are three steps to ensuring you are an active up-to-date 50-State Network “Super Advocate”: two short registration forms – for CreakyJoints and our access questionnaire – and a little bit of homework to get you up to speed.

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First, please make sure that you are a member of CreakyJoints – our arthritis (and the many related conditions who share our pain) online patient community that is a part of the Global Healthy Living Foundation. Joining CreakyJoints is free and confidential, making you a member of the 50-State Network in good standing, and giving you access to the world’s best education, support and coping options, improved access-to-care and opportunities to participate in groundbreaking patient-centered research. If you think you are a part of CreakyJoints because you get our newsletter, but you haven’t registered to create an account, you will need to register by clicking here: http://www.creakyjoints.org/registration-splash/ – this process should only take a few minutes.

After you have done this, we would like to understand your advocacy interests and access challenges better. What prompted you to join the 50-State Network? What challenges, if any, are you facing accessing healthcare? This short questionnaire helps us understand our network, and will allow us to group folks together both regionally as well as by common issues. Plus, this is how we strengthen our voice! If you haven’t already done so, please fill out this short, questionnaire: http://www.50statenetwork.org/join/knowing-you-better/

Third, it’s time for your homework. Don’t worry, there are no tests. But we do want to familiarize or make sure you are reoriented with many of the issues that we’re actively working to address. Take a few minutes to browse the talking points, and peruse the following sites, and begin visualizing yourself getting involved in these issues – at your level, with your own voice. Again, there won’t be a test, and you’re not expected to be an expert overnight, and we won’t push you out to the podium just yet, but we would like you to learn as much as you can about the following important issues:

 

Biosimilars, we love them and their promise of reducing costs, but some state legislatures don’t. There are proposed laws and regulations that will allow your pharmacist or insurance company to switch your biosimilar or biologic with notifying your doctor. Go to http://www.HealthyBiologics.org to learn more.

Fail First and other Step Therapy “hoops” we have to jump through, just to get the medicine that our doctor prescribed in the first place. This is just plain wrong, and GHLF has been a champion of eliminating this for many years. Go to http://www.FailFirstHurts.org to learn more.

 

Lastly, and perhaps most exciting, is our Digital Health Advocacy Summit (#dhAdv) – The opportunity to use social media to strengthen our policy and advocacy efforts. GHLF recently produced a major Summit in Washington, DC, convening patient, caregiver, doctor, nurse, and other organizations to learn about social media best practices. Check out http://www.dhAdvocacy.org for more information, including a resource guide that you can peruse to see what we’ve been circulating to other organizations. There is lots of information in that resource guide to help you brush up on your social media skills.

Remember, you are part of a group of fellow patients who are poised to make the greatest impact, thanks to technology (such as social media), which now means that one voice – your voice – can be carried to countless people.