Home: Publications: Forum Archives: MFF Forum, edition 2
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: http://www.congress.org 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.
