Thursday, May 31, 2012

How You Can Help

I hope I'm not being too forward in asking for your help with something very important to us. Our US Senate and Congress are currently contemplating legislation that would extended the time that transplant recipients receive coverage under Medicare for their immunosuppressant drugs. Currently, kidney transplant recipients who are eligible for Medicare due to irreversible kidney failure, but who are not Medicare-aged or Medicare-disabled, lose their Medicare three years after the transplant. As you all know through my ranting and raving about health insurance, Stephen falls exactly in this position. He currently receives Medicare, not because of his age, but because of his end stage renal failure. He will continue to receive Part D coverage, for his immunosuppressant drugs for 36 months after transplant. But once that time expires, we lose Medicare and have to rely on our primary insurance (through Bill's employer) to pay for the drugs. Although the drugs are expensive and we will pay a lot out-of-pocket, we're fortunate enough at this time that we can work and pay for the drugs. But I'm very concerned for Stephen when he reaches the age where he no longer qualifies for our health insurance and is on his own as a young adult. I think back to when I graduated college, and I was dead broke moving to one of the most expensive cities in the country. He will need these drugs for the rest of his life to ensure he doesn't reject his kidney and basically to keep him alive. This legislation would continue access to Medicare indefinitely, but would cover anti-rejection medications only. All other Medicare would end after three years for kidney recipients, as under current law.

I'm asking that you might be able to take 10-15 minutes and write to your local Congressman/woman and Senators to either thank them for already supporting this Bill or to ask them to please give their support for this important health care bill.

You can send an automatic note (it's super easy and quick) through the National Kidney Foundation website. Or click here to see the Current Sponsors and Co-Sponsors of this legislation and send them your own personal note.

Both our Congressman (Jim Moran) and Senator (Jim Webb) are co-sponsors, so I emailed them directly through their websites to tell them a little bit about Stephen and why this legislation is so important to our family. If you're interested in using my note as a basis for your own, here's what I said:

Dear Congressman Moran,

I wanted to send you a short letter of thanks for your support of the very important Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011, which was introduced by Senator Durbin (D-IL) and Representative Burgess (R-TX) to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

This bill is extremely important to me as it directly affects my 17-month old son who has end stage renal disease and is currently on the waiting list for a new kidney. My son, Stephen, was born with a rare kidney disease and had both of his kidneys removed when he was 6 days old and started dialysis two days later. Since that day, he has been on dialysis for 12 hours every night and will be until he receives a life-saving kidney (hopefully later this year). He currently receives Medicare Part A, B, and D due to his diagnosis, but as you know, will lose his Medicare coverage 36 months post-transplant.

My husband and I are lucky enough to be able to provide him with primary health insurance through my husband's employer which will help to cover his immunosupressant drugs, but we will still have to a significant amount to pay out-of-pocket to pay for those drugs. And once my son is an adult and no longer qualifies to be under our health insurance, he will be on his own as a young adult to pay for these life-saving, but extremely expensive drugs that he will need for his entire life.

We are hopeful that by the time he is an adult, technology in this field of health care and science will be much improved and researchers will find a cure for end stage renal disease. However, we must plan for the worst case scenario and begin saving for his health care costs now. Even though he is just 17 months old, we've had to establish a medical savings account for him so that we can give him the best chance at life once we are unable to provide him what he needs.

By supporting this bill, you are giving thousands of people the chance at a long, healthy life without the concern and worry of how they will pay for their life saving drugs. Having a child with a fatal disease that has no cure is devastating, but knowing that he'll always be able to receive his life-giving medications, helps to ease some of that burden. We've had to make a lot of sacrifices over the past 17 months, but I hope to God I'll never have to choose between rent or food and his medications.

Thank you again and please feel free to read more about our amazing miracle baby at

Lindsey N. Schwartz

Thank you so much for considering doing this for us. Who knows if any of these elected officials even read their email, but hopefully it will fall into the hands of someone that actually cares about their constituents. We really appreciate all the support!!!!

Update @ 2:15PM Friday afternoon: I just received a call from Senator Webb's office! The woman I spoke with was so nice and appreciated my thank you letter and will be passing along the letter and our personal story to the Senator himself!! I can't believe it and am so excited! I love being surprised by the care and helpfulness of people. It renews my spirit!


  1. Thanks for posting Lindsey! I sent the letter as well. Obviously for Stephen, but also for several friends from high school who have received or are in line to receive transplants. It touches the hearts of our family, as my dad is in the profession to help people - how fortunate it would be to receive an organ; and then unfortunate to have the financial strain afterwards! ( : Thanks for updating!

  2. Thanks for posting! I will send a letter right now. Also, love the video of Stephen chasing Mabel! So cute.