Why Should I Be Interested in Advocacy?

What good does it do me?
There are many issues pending before the United States Congress and state legislatures that affect you, directly or indirectly (or may in the future): managed care, Medicare, Medicaid, disability, funding for research, etc. A good example of a grass-roots advocacy project that affects many of us is one the National Psoriasis Foundation (NPF) initiated last year. The availability of UVB and PUVA treatments were declining because of low insurance reimbursement rates. The NPF realized that if they focused on increasing the Medicare reimbursement rate, private insurers would follow. Through a lot of hard work, they were able to accomplish their goal. Without their diligence, we may have lost a lot of UVB and PUVA locations necessary for treatment of our disease.

Another important issue is that Medicare currently does not cover oral cancer drugs. This is an issue the Mycosis Fungoides Foundation is watching carefully. Targretin® capsules fall into this category.

We welcome you to become involved in the advocacy process. What are you interested in doing? Talking to your legislators? Researching an issue? Attending an advocacy day in Washington? Please get involved to ensure your lawmakers hear your views. To let us know how you would like to get involved, contact us.

An easy way to e-mail your legislators is to go to: and put in your zip code to obtain your representatives. Then there is a one-click option to email to all your electe officials at once.

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Cutaneous Lymphoma Foundation is not responsible
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