INTRODUCTION

Sickle Cell Disease (SCD) is the most common inherited blood disorder in the US. NYS has the largest population of people living with SCD in the nation – an estimated 10 to 12 thousand people. SCD primarily affects people of color; SCD occurs in about 1 of every 2,230 Latin American births in NYS, and about 1 in every 230 African-American births in NYS - the incidence among Caucasian American births in NYS is about 1:41,647 (1,2).

SCD advocates across the state have spent years fighting for the passage of legislation for this patient population, but with little success. I, along with other medical students have come together to support the local SCD community in Albany, NY and put our weight behind the necessity of this bill. Read on to find out why this is so important!

THE PROBLEM

It is well known that non-white Americans experience greater health disparities than the rest of the population. SCD in particular has been historically underfunded and overlooked. A recent study shows that SCD is 3x more prevalent than cystic fibrosis, a disease that primarily affects Caucasian Americans. Despite being less prevalent, NIH funding per patient for cystic fibrosis is higher than SCD, and disease-specific drug development is also preferential to cystic fibrosis over SCD (3).

It is also important to recognize the unique difficulties people with SCD face and how it has limited their access to care. Many patients with SCD use Medicaid to finance their healthcare. In New York, SCD is the most expensive disease per patient for Medicaid, costing 50% more than expenses for HIV/AIDS. One explanation is that patients often suffer painful vaso-occlusive crises (VOCs) and for lack of a better option, are treated in the emergency department. Studies show that hospital and primary care providers alike can harbor negative perceptions about this population, and often lack adequate experience in managing VOCs acutely as well as in the follow-up period (4,5).

THE SOLUTION
We are calling on the New York State legislature to pass the Sickle Cell Treatment Act of 2021. There are three separate bills, and the purpose of each is supported by medical literature:

A.6429/S.5606 Requires hospitals distribute literature created by the commissioner to patients at a high risk of sickle cell disease
Early SCD awareness prevents complications in transitional care later in life and helps identify families who need additional support (6).

A.6430/S.5605: Creates the sickle cell disease detection and education program
Addresses the obvious funding deficit and ensures that the burden for structural reform is placed on healthcare organizations (4).

A.6431/S.5604 Establishes the Sickle Cell Treatment Act 
This bill establishes high-quality comprehensive care, which have been shown to reduces mortality for patients with chronic inherited disorders including SCD (7).

HOW CAN I HELP?
1. Sign this petition!
2. Copy/paste this information into an email and send it to your NYS legislator (Assembly: https://nyassembly.gov/mem/search/ | Senate: https://www.nysenate.gov/find-my-senator).
3. Share this petition with everyone you know.

Thank you!

Cited Sources:

1. Center for Disease Control and Prevention 2017.
2. National Heart, Lung and Blood Institute (NHBLI), The National Institute of Health (NIH), 2013.
3. Farooq et al. Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated with Research Productivity. JAMA 2020.
4. Minniti CP, Vichinsky E. Lifespan care in SCD: Whom to transition, the patients or the health care system? Am J Hematol. 2017.
5. Puri SA. Improving Emergency Providers' Attitudes Toward Sickle Cell Patients in Pain. J Pain Symptom Manage. 2016.
6. Inusa BPD et al. Paediatric to Adult Transition Care for Patients with Sickle Cell Disease: A Global Perspective. Lancet Haematol. 2020.
7. Raphael JL et al. Association of care in a medical home and health care utilization among children with sickle cell disease. J Natl Med Assoc. 2013.