Barbara Dyskant, Southern Tier

My name is Barbara Dyskant, and I’m a leukemia mom. I live in rural Western New York State. I feel sickened by our “healthcare” system that is neither healthy nor caring.  I urge everyone to support universal single-payer healthcare, to support the New York Health Act.

On May 26, 2009, my beautiful 17-year-old daughter Nadine was diagnosed with leukemia. 40,000 people in the U.S. die from lack of health insurance each year; she could have been number 40,001.

We came scarily close to not catching her leukemia on time to save her.  She was pale and tired and I thought she was “just anemic.” With our high deductible insurance we would have to pay for a blood test.  After some thought, I got her the test anyway “just in case,” picking up an iron supplement on the way to the lab. After the test we got a call: “Take her to the emergency room now.” We drove to Strong Hospital in Rochester, where she was immediately whisked upstairs for transfusions, hospitalized for a month, and underwent more than two years of chemotherapy. The oncologist told us we’d caught the leukemia in time for her to have the best chance of survival; had we waited much longer it could have been too late.

Our small rural hospital did not have the facilities to treat her. I moved to Rochester, 110 miles from our home, to care for her. My husband, however, was unable to go with us because he couldn’t leave his job without losing our medical insurance. Our family was broken for two years.

The fact that our fear of the cost of going to the doctor could have led to her death makes me wonder how many of those 40,000 needless deaths were because of people not having the tests they needed due to costs.

Thank goodness Nadine survived, and she is now 26.  She has been in remission for over six years, her hair grew back long and full, and she lives a full, vibrant life. After treatment she was accepted at music conservatory and is now a promising young flutist and composer; an exciting career awaits her.

However, they call this remission, not cure; she is in lifelong danger.  She needs lifelong, comprehensive monitoring to check for recurrence of cancer or a new disease due to the scarily dangerous chemo that saved her life. Some of these “late effects” can take over 20 years appear, and without prompt treatment she could die.

We expect the best, but Nadine and I aren’t stupid. We know her health could fail suddenly. This is a lifelong burden and it is huge!  

My husband is 70 years old, and he put off retirement until Nadine is 26, to keep her on his medical insurance. Once she’s off his insurance, she’s in a black hole.  I worry desperately about what health options she’ll have, whether she’ll be free to pursue her dreams despite insurance concerns, what will happen when we can no longer help, and whether she’ll end up sick and poor and unable to get lifesaving care if she needs it.

It is terrifying that our insurance laws and regulations fluctuate with the political climate. Insurance companies have bottomless stores of our money, and they use OUR money to lobby for the ability to deny US care. Lack of insurance could be a death sentence for my daughter and many others.

I fear for all young people, for all people facing health risks.  They are being robbed of the freedom to pursue life, liberty, and the pursuit of happiness, shackled to a medical system that bleeds us of wealth and health.

Every other “civilized” country, and many less developed countries, have universal healthcare.  Among the most developed nations, our life expectancy and quality of care is the worst, despite our healthcare spending being the highest in the world.

Only universal healthcare, like the New York Health Act. will give Nadine and those like her their best chance of living life free from the danger of illness, poverty, and death due to lack of healthcare.