By Kate Pollack
My name is Kate Pollack, and I am writing on behalf of my parents, Lisa and Gary Hullfish. Nearly five years ago, my mother was diagnosed with Frontotemporal Dementia. Just a few years after this diagnosis, we found out that she was also suffering from the early signs of ALS.
Her decline has been much faster than we ever could have expected. I was only able to care for her at home for about a year before her condition became too severe. In just a few short years, and at only the age of 63, she now requires a feeding tube, a ventilator, and can no longer move her limbs.
We have been struggling with the cost of Mom’s care for nearly three years. Not including medication, her daily care is $1,226. The monthly medication bill averages $175. On top of that, one-on-one assistance provided by a homecare agency averages $2,107 each week.
We pay entirely out of pocket and do not qualify for Medicaid. While we’re fortunate to be able to care for her as we do, it’s not something that’s sustainable. Everything that several generations of my family have worked and saved for will slowly be expended.
As residents of South Jersey, I’m so grateful that The ALS Association Greater Philadelphia Chapter engages in dedicated advocacy on behalf of people and families impacted by ALS — and are so glad to learn that there is legislation in New Jersey to limit the out-of-pocket cost for prescription drugs and increase funding for ALS care services.
Families like mine must choose between losing the person they love the most in this world or losing everything else. Please preserve the funding in the New Jersey budget for ALS care services.
To use your story to make an impact on ALS advocacy, email Tony@alsphiladelphia.org today.