Mark your calendars – the 2017 annual BDAN Fall Family Retreat will be Saturday, October 7 through Monday, October 9 (Columbus Day weekend) at the scenic Aldersgate Retreat Center in the Adirondack Mountains near Greig, NY!
This informative and fun 3 day/2 night program is open to families, couples, and adults affected by bleeding disorders (hemophilia, von Willebrand Disease, Platelet Disorder, etc.). The Retreat is free to attend, and people are accepted on a first come – first served basis.
For more information on the Retreat and to see pictures of the grounds, click here. To check out photos from previous family retreats, click here.
Now that legislation to repeal or replace the Affordable Care Act has failed in the Senate, the question for health care advocates is what’s next? Bleeding disorders advocates should focus on issues at the state level using a 50-state advocacy strategy.
The national health care debate is on hold.
Health care is not a priority for the national Republican party. Fighting the ACA was a convenient way for Republicans to unify their party. But Republicans don’t agree on what to do about health care, and continuing to debate the ACA will weaken their party. Look for Republicans and Democrats at the national level to shift focus to other issues in preparation for the 2018 Congressional elections. This shift offers health care advocates an opportunity to re-focus their efforts elsewhere.
Meet the “Bruzer Buddy”, a plush teaching tool created by Jessica Graham to help people learn about the signs and symptoms of a bleed.
The health care we receive is increasingly affected by public policy. This is because more laws and rules are being created to regulate health insurance and health care so people can get safe, quality, and affordable care. Therefore it’s more important than ever for people with bleeding disorders to be involved in advocacy.
Access To Medications
Bill S.3484 / A.4786, currently pending in the NY State Legislature, would protect the right of all patients to have same-cost access to their prescription medications from a local or mail order pharmacy based on the option that best meets a patient’s individual needs.
People often need help to deal with the many challenges of life, and people with bleeding disorders often need information and resources especially created for them. These links will take you to a number of national organizations which can help! click here
Poverty is when a person or family experiences a persistent or recurring lack of stable financial resources to provide for their basic needs (food, clothing, shelter, & health care) and access basic opportunities for advancement (higher education and better employment).
Those receiving assistance may still be considered as affected by poverty because assistance (esp. Government programs) is typically designed to alleviate deprivation, not to provide a pathway out of disadvantage.
Poverty is a major challenge for the bleeding disorders community because it can negatively impact the health and well-being of those affected in many significant ways, and people with bleeding disorders have a much higher rate of poverty than others.