Health Care Reform and Advocacy

FCA: Advocacy Tips for Family Caregivers
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"Families—not institutions—provide the majority of care to chronically ill and disabled loved ones. These families know the enormity of the burden in caring for someone with Alzheimer’s or Parkinson’s diseases, stroke, traumatic brain injury, or other long-term conditions. They also know the challenges in locating appropriate advice, services and respite.

Personal experience with community agencies, round-the-clock care, and financial hardships mean families know what the important issues are. This puts family caregivers in a unique position to act as advocates. Caregivers can educate elected officials charged with development of public policy and funding priorities.

This fact sheet offers tips for effective strategies for families."

More info: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=389

Comments: I frequently ask myself, "What can I do to help?" In those times when I know my child is not feeling well, and I have done all that I can do, what then can I do with all the extra nervous energy that builds up from worrying? I work to be strong, and I am good at that. However, there is a part of me that is never satisfied with the limitations on what I can personally do to help my daughter.

So, I became active, started a chapter of the Vasculitis Foundation in New Mexico. That is slow going, but connecting with other patients and families does channel a lot of energy that might have gone into simply bugging Meaghan about her condition... which drives her nuts.

The FCA fact sheet about family advocacy brings to mind other ways to channel those energies into a more constructive form that might actually affect the root problem, which is we need more research to develop better treatments and eventually, a cure.

I personally worry about my daughters ability to get insurance coverage. She has certain practical paths to take, mostly involving working for a firm or institution large enough to preclude "preexisting condition" coverage exemptions. On the whole, I am in favor of reforms to health care. Just not sure yet which specific reforms will help, and which might make things worse. Or if the best reform will get its heart ripped out by political wrangling. It is worrying.

Doctor Sterns, from LA Childrens Hospital spoke to the pediatric session at the 2010 VF Symposium, and included news about a national registry for pediatric patients with chronic illness that was promoted, and will be funded, under the health care reforms commonly referred to as the Obama Health Care Plan. I would like to know what that really means to my daughter.

My focus is on a young woman who is seventeen and will soon transition from being a pediatric patient to an adult patient. For the pediatric side, I am happy to see the American Academy of Pediatrics stepping up to actively engage this health reform movement.
More info: http://www.aap.org/advocacy/washing/mainpage.htm

We need concerted efforts for all of our vasculitis patients. If you know of an organization that has a targeted plan to promote health care changes that will benefit your loved one, then please share that with this group.

I learned second hand, that one doctor, and I am not now sure which one, spoke in the "All About Vasculitis" session about an alarming statistic. He said, "One in ten persons will be affected by an autoimmune condition."

One in Ten. That is a powerful talking point that I think we can use in every conversation about vasculitis to leverage our own rare condition to the public as we seek to increase awareness. We need a laundry list of talking points that can be put into a bulleted list for people to memorize so they can promote action oriented awareness.

So now I want to dig deeper, and see what reform legislation can really do to help promote research funding into rare autoimmune conditions, and of course especially vasculitis. If my writing letters to congressmen can help promote those efforts, then I am all for it.

I would like to make sure any debate on this topic remains civil, and also avoiding the obvious repeat of media pundits criticisms of what is missing from any particular health care reform plan... Those details can be referred to by citing a summary article with a link so all sides can be represented without burdening this group with unhealthy emotion.

Let's try to stick to practical and usable facts on how specific reforms will impact health care and quality of life issues for our chronically ill patients... adults and children alike. If you do not like one plan, then offer up the alternative you think is better. I think we all might like to know the different options, so keep it positive. Don't just cite the media, try to cite the original source if you can get to that. What do you all know about the health care reforms, and what are you doing personally to increase awareness about those issues?

If you find good sources of information about the different health care reform proposals, please share that information with the group as a reply to this discussion thread. We might even start a resource page for this topic on the blog once we collect enough citations.

I realize this article is jumping in with both feet, but we already have a place to talk about what medications to try, and how to deal with Prednisone, etc.

I am hopeful this group can branch out and empower caregivers with more tools for keeping themselves strong, making time for yourself amidst the day to day constant giving, and even providing some simple emotional support when someone is just at the end of their rope. This group is private, so you can let your hair down. Or, as this article suggests, you can also pick up the torch and carry it to help promote work that will lead to actual progress towards improved treatments and maybe even a cure.

So, what do you think about all that?

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Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Albuquerque, New Mexico
Copyright 2010