July 3, 2019 at 2:42 pm #46887
Learning Objective: Explain why an engaged citizenry is vital to the ideals of American democracy.
Answer and defend your answer:
How do bleeding disorganizations measure up in terms of civic engagement? What do they do well and what could they do better?July 19, 2019 at 11:17 am #47046
This is a difficult question to me, because I’m relatively new to the bleeding disorders advocacy community and haven’t been very active with my local chapter before this year. Based on what I know, the Eastern PA chapter is VERY active in state-wide advocacy and has regular meetings with the state insurance commissioner and the staff of federal elected officials. I believe that there are two areas in which we could improve 1) we could do better at working to inform elected officials who may not necessarily support the ACA about what our community stands for and 2) we could include in our advocacy more HTC staff members and maybe even doctors, if that’s possible. Whether or not they can do direct advocacy doesn’t necessarily matter, because I think that just keeping doctors and medical professionals abreast of what we are doing is an admirable goal.
I’ve shared my advocacy work with my doctor and she has been incredibly receptive and interested. (:July 22, 2019 at 5:53 pm #47088
I absolutely agree with Natalie that we need more doctors involved in hemophilia advocacy. Who better understands the needs of hemophiliacs than hemophiliacs themselves and their doctors. Physician advocates can certainly make great strides in laying out the basic necessities to maintain good health while living with hemophilia. In the ACA there were provisions made for free preventive services(example mammography)so that we could prevent higher costs down the line. There should be similar free preventive services in hemophilia. For example, hemophiliacs should get free joint sonography to prevent target joints from developing, free harvoni to prevent cirrhosis and hepatocellular carcinomas. These latter conditions inevitably lead to much more expensive liver transplants down the line.July 25, 2019 at 3:28 pm #47132
by and large, bleeding disorder organizations have made great strides in working to become more active in civic engagement. It’s pretty remarkable that organizations with such small numbers of people have been able to coordinate state advocacy days and other gatherings to attempt to protect the lives in our community. It is vitally important to gather as many people in our local affected communities as possible to show that our issues are serious and we are serious about our issues so one area of improvement I see is to engage absolutely everyone who is affected with a bleeding disorder and try to at least get them on a roster so that more people can participate in civic engagement as their schedule allows.July 25, 2019 at 3:34 pm #47133
I’m glad to see in Natalie and Mike’s answers the need for the medical community to be more involved as well. I agree. I’d encourage our patient advocacy organizations to inform HCPs of our community’s needs and how they can help. They are a strong voice in the national healthcare debate that is often not mentioned (with so much focus being targeted at pharma, insurance, and PBMs). How powerful would it be if the community’s HCPs could discuss with our elected representatives necessary measures that would help them provide better care for their patients? I’m not sure about all the pros and cons of HCP involvement, but it is worth exploring. I personally find that there is a disconnect between providers and their patients’ needs (beyond the prescription). We should keep them informed and invite them to the conversation. It may help.August 7, 2019 at 2:44 pm #47281
For the past couple years, we have felt an urgency from bleeding organizations to participate in advocacy. That’s how I became more involved. Advocacy programs have really expanded, and I think that advocacy will remain a primary focus for awhile since healthcare is so unstable. Bleeding organizations give many opportunities for their members to become involved with advocacy in their state and at the national level, but I think it will take the members to become more interdependent with each other to grow its network, as “the concern for the common good” podcast talked about.
You must be logged in to reply to this topic.