survey on family financial hardship

The post below has been gathering dust in draft for a week or so. I've meant to publish it...but for whatever reason (probably tied to a child between the ages of 18 mos & 7 yrs!) never did. But isn't it fitting that I'd find the time the day after facing the possibility of opening up another costly round of ACTH.

Before Trevor's diagnosis I really wasn't too concerned with money. We had enough. And that was all we needed.

My enough theory was shattered when our insurance denied Trevor's coverage and we sat looking at a medication on a price shelf so far over our heads that we couldn't even read the label! It was out of reach. And our son's life hung in the balance.

We were lucky. In the end...AIG covered everything. The only toll we paid was emotional. Oh...and the hit to 7 1/2 month old Trevor's life-time cap. Which btw is one of my heart convictions in believing that Questcor abused the price point for this drug. Consider this: even should a family have insurance approval...at $150,000 for a five week course...it takes quite a chunk out of their child's insurance cap. Most often before the baby has celebrated their first birthday!

But not every family is so lucky. And the financial strain for families dealing with IS is often on-going. J always teases me with "You're such a Democrat!" But along with wishing there were government subsidized ocean front condos in which every tax-paying citizen had a week reserved...I also believe families should not be put into the position of choosing to live below to the poverty level so their child qualifies for State aid! Which is why I appreciate opportunities like the one below.


As part of our work, we are collecting
stories on financial hardships families have had in caring for a child with
special needs. We will use these stories to show the importance of improving
insurance coverage and financing that will benefit children and their families.

The stories will include information about:

The child's medical condition; The parents' work status; and
How the family copes with the financial responsibility of caring for a child with special needs

How will this work?

If your story is selected as the result of your survey responses, we
will work with you to develop it, first through your own written words and then
through follow up questions that we may ask. We will draft a case study from
your story and send it back to you for your approval or changes.

How will the stories be used?

We intend to include these case studies in written materials that will be printed in hard copy and posted on our website, and sent to policy-makers, health care providers, families, advocates, legislators and other interested parties. We may not use all of the case studies in all of the materials produced. If you would like to share your story with us and others in this way, we ask that you carefully consider the questions in the consent form and provide us with whatever consent you feel comfortable with.


If you would like to receive an electronic copy of the survey so that you can type
your responses, please e-mail Catalyst Center director Meg Comeau at mcomeau@bu.edu. Please note that you must sign and return an original copy of the consent form to us.

Our mailing address and fax number are as follows:

The Catalyst CenterBoston University

School of Public HealthHealth and Disability Working Group

374 Congress Street,Suite 502Boston, MA 02210

Fax: 617-426-4547


Mmmmaaahvelous said...

Oh, my heart goes out to you and everyone else in that situation. I can't imagine. Even fathom. You should not have to make those choices. Life should be a right! Not a return on investment or lifecap! It's just mindboggling and maddening and everything in between.
Good for you for stepping up and fighting for what is right. That's the only way change will be made. If only every person had the strength and huztpa to do!
Everyday I am grateful to be dealing with Canada's medical system, as imperfect as it is, I am grateful.
Best of luck to you in your lobbying. It's worth it!

baby trevor's mommy said...

My dad tells me I'm an activist? *smile*