Be Involved, Ask Questions, Take Action!
Managing a bleeding disorder can be complex and require specific knowledge and services. HFA speaks with individuals weekly who struggle to obtain needed exceptions to rules and policies from their service providers.
Receiving temporary exceptions serves that particular family or situation but exceptions can be reversed without input or prior notice, and may only last a short time, needing constant renewal. Policy or rule changes provide more overall protection for the entire community.
As a community advocacy organization, we recognize the need to obtain policy changes for families with bleeding disorders. To do so, we need to present a unified request with multiple examples of how a current rule or policy is not effective or may possibly harm patients.
We know that we are our own biggest advocates. We need you to take action! Help us gather this information into that unified request to ask for policy change on behalf of all those affected. HFA has created the following form to support the collection of experiences our community families are having with their providers.
This form is not for emergencies or case management. You are encouraged to contact your providers to obtain an exception for your own circumstances, and use all of the resources available to the community to do so. This form will be used, in conjunction with other responses, to build a broad case for change. With this knowledge, together we can work with other advocates, insurance companies, pharmacies and other providers to request needed changes.
Thank you for working together with HFA on this important initiative.
Regards, Your friends at HFA