What does an awareness campaign have to do with PV, ET and MF?
In a few days, the month will change to September, which is recognized nationally as Blood Cancer Awareness Month. While you are already aware of MPNs, or myeloproliferative neoplasms, there are many factors indirectly but adversely affecting people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. A few we hear from patients frequently are:
Friends or family not believing they are "really" sick or have cancer
Insurance or disability denying coverage or a claim
Problems getting medication, either because it is too expensive, their deductible is too high, or the medication is not approved for MPN
No suitable clinical trials for their diagnosis of PV or ET
No way to prevent progression
These are problems being addressed by the MPN Research Foundation and other advocacy groups 12 months of the year through education, research funding, and advocacy. Although a month of awareness won't resolve the issue completely, it is a good opportunity for us to work together toward improving the lives of people with PV, ET, and MF. Here are a few activities you can share with friends and family during September to spread awareness about MPNs:
We'll also send you weekly emails about these and other initiatives so that you can take action during September. There is no magic switch or quick fix we can offer you today but we at the MPN Research Foundation promise to be there for people with PV, ET and MF by supporting research until better treatment options and eventually a cure is found. If you want to find out more about our programs, stay tuned during September and feel free to reach out anytime at 312-683-7243 or firstname.lastname@example.org.