Two brothers, one rare disease and a race against time
Anthony Spina has been battling a rare genetic disease since childhood. His younger brother, Nicholas, is facing the same crisis.
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Two brothers are facing the fight of their lives in a medical crisis that is growing more urgent by the day.
They turned to News 12's senior reporter Tara Rosenblum for help.
Anthony Spina has been battling a rare genetic disease since childhood. Now, at 41, he needs a second kidney transplant to stay alive.
"My kidney percentage is 6% they work right now. So, without the dialysis, I would probably die in a couple months," he says.
His younger brother, Nicholas, is facing the same diagnosis.
"We both need transplants at the same time right now," he says. "I've been on the waiting list seven years this month."
Their crisis hits close to home for our News 12 family - the brothers are cousins of News 12's own morning anchor, Rich Barrabi.
The Spinas aren't alone. They are just two of nearly 12,000 people across the tri-state area who are waiting for a lifesaving organ transplant - with one of the largest and longest waitlists in the Western Hemisphere.
BREAKDOWN OF ORGAN WAITING LISTS:
New York | 7,993 |
|---|---|
New Jersey | 2,495 |
Connecticut | 1,163 |
Source: Donate Life America
"There's so many people. And we're all in the same boat. It's just it's just sad," says Anthony.
For the past decade, the Turn to Tara team has investigated why this crisis persists - one that claims roughly 500 local lives every year.
MORE: Leaving to Live: A Turn to Tara Investigation, Part 1
MORE: Leaving To Live Part 2: An Agonizing Wait
Rosenblum's investigation uncovered a troubling mix of factors, including a shortage of donors, policy barriers and inequities in access, which have all contributed to waiting periods that can stretch for years - often depending on a patient's ZIP code.
"It's ridiculous, the wait. New York, this has to change," says Nick.
There has been some progress since the Turn To Tara investigation began.
New York rolled out a first-in-the-nation program last year to help cover costs for living donors, and a new law now lets patients register at multiple transplant centers - even out of state, which expands their chance for a match.
Advocates say more needs to be done.
"Organ donation is literally the difference between life and death," says state Assemblywoman Yudelka Tapia.
Tapia is pushing for a bill this session that would let New Yorkers sign up as organ donors while filing their taxes online. It's modeled after similar legislation in Michigan.
The Bronx Democrat knows the fight firsthand. She has one son who waited years for a transplant and another still in dialysis.
The efforts come with urgency: just 53% of eligible New Yorkers are registered as organ donors, which is well below the national average. In New Jersey and Connecticut, the numbers are even more dire.
"I understand it's hard to give up a kidney. It's the only way to save me," says Anthony.
