Important Sickle Cell Bill Signed by Governor Sisolak

Sickle cell disease (SCD) got quite a bit of attention during the most recent Nevada legislative session. As a result, SCD patients will have protections that will help ensure they receive proper treatment around the state, and the incidence of sickle cell disease and those that carry the trait will also be tracked in the state.

Assemblywoman Dina Neal (Nevada’s 7th District) sponsored and worked to gain support for AB 254 which was signed by the Governor on June 3, 2019. We had the chance to speak to Assemblywoman Neal about the experience and how it will help Nevadans.

Cure 4 The Kids: How did you become aware of the need for services for those with sickle cell disease?

Assemblywoman Neal: After the 2015 Legislative session ended, I was talking with Clark County Commissioner Lawrence Weekly who has a nephew with sickle cell disease. His opinion was that we had very little care available for those affected by SCD and he asked if I would look into the issue. Since that time, I’ve been doing research on my own about how the disease affects people and what can be done about it, as well as looking at some of the available treatments. I also learned about the Pacific Sickle Cell Regional Collaborative (PSCRC) which is how I got in touch with Dr. Rashid.

(Editor note: The Pacific Sickle Cell Regional Collaborative is a program of the U.S. Department of Health and Human Service’ Health Resources and Services Administration. The program is aimed at improving medical treatment fo sickle cell patients. As a PSCRC member, our providers, including Dr. Rashid, reach out to medical facilities, hospitals and clinics in Nevada offering education, information and collaboration on sickle cell disease treatments.)

I also had a few meetings with several managed care organizations (MCOs) and tried to build what would become a bill around the things they could do for sickle cell patients that wouldn’t necessarily cost them money. I tried to blend what I heard from patients and what I heard from MCOs, as well as Dr. Rashid and others and that’s how I came up with AB 254. When the 2019 legislative session began, I prepared to carry the bill.

Cure 4 The Kids: The legislative process can be tough, did you get any push back against this bill?

Assemblywoman Neal: I feel really positive about it. It is a small sector of the population that is affected by this, but I think the time I spent speaking with MCOs and other health organizations was good. To be very honest, I think I helped educate some of the managed care companies on the disease implications for sickle cell patients. I’m glad I was in a position to be able to do that because that will lead to better care for sickle cell patients in the future.

There were some pushbacks, though. A few managed care organizations didn’t like the idea of unlimited refills. I asked them how many sickle cell patients do you have? They told me none. I thought it was very odd that they were objecting to something for patients that they don’t even serve.

There was no question the bill would get out of the Assembly. The Senate is always another story since, historically, that is where lobbyists will frequently try to amend the bill on behalf of their clients. Thankfully, the bill had great support int he Senate, including from Senator Julia Ratti (Washoe County) who had her own bill requiring newborns be tested for SCD at birth. She really stuck with me and didn’t budge with lobbyists and that helped get the bill through the Senate.

Cure 4 The Kids: What do you feel is the most important aspect of AB254?

Assemblywoman Neal: The fact that we have comprehensive care for sickle cell patients in Nevada is a first. That’s not something that has ever existed before around the state. We’ve created a pathway so that when a patient enter the system (doctor or medical clinic or hospital) they will be managed and someone will be following their case — that’s new. Once they arrive at a hospital they cannot be misdiagnosed or mistreated and we will build a registry around these patients and document what is happening to them.

We also asked Cure 4 The Kids Foundation’s Dr. Nik Abdul-Rashid, who oversees the clinic’s Sickle Cell Treatment Center about the important aspects of the bill:

Dr. Rashid: The common theme that I hear from patients and their families is that there is a general lack of understanding of sickle cell disease.  That misunderstanding appears at all levels — from the hospital where a patient may need to seek treatment for severe complications, to the providers who see a sickle cell disease patient and who may not be aware of the current and improved treatments. Outside the medical community, it can also be a big issue.  Those who are unfamiliar with sickle cell disease — which can include educators and even other students — may begin to view those affected by the disease differently which can lead to bias in many different ways. I think it is vital that we work to educate people at all levels in our community about what sickle cell disease is, and what it is like for people living with this condition.  This bill – AB254 – is a great step in that direction.

Since 2007, Cure 4 The Kids Foundation has provided treatment to sickle cell patients. In 2016, Cure 4 The Kids Foundation significantly changed its treatment to include a more comprehensive approach, leading to the creation of the Sickle Cell Treatment Center of Nevada. Under the direction of Dr. Rashid, sickle cell patients from birth to 18 years of age, as well as established adult sickle cell patients, receive comprehensive care in addition to any more immediate health needs.

Comprehensive clinics provide a more detailed analysis of a patient’s medical and psychosocial needs and ultimately better treatment.

  • The comprehensive clinic team includes:
    Board-Certified Pediatric Hematologist
    Pediatric Nurse Practitioner/Sickle Cell Comprehensive Clinic Coordinator
    Pediatric Neuropsychologist
    Social Worker
    Education Specialist
    Child Life Specialist
    Clinical Research Associate
    Registered Nurse

If you would like to learn more about sickle cell disease treatments at Cure 4 The Kids Foundation, or to schedule an appointment, please call 702-732-1493.

AB 254 Summary:

Requires Nevada’s Chief Medical Officer to establish and maintain a system for reporting sickle cell disease and its variants; also authorizes administrative penalties for failing to report certain information.

Requires testing newborns for the presence of sickle cell disease and its variants; allows for parents to be tested at same time.

Requires Medicaid to cover certain supplements recommended by the Pharmacy and Therapeutics Committee which can be helpful to sickle cell patients.

Requires a health insurer to include coverage for certain prescription drugs and services for the treatment of sickle cell disease.

Authorizes a prescription of certain controlled substances for the treatment of acute pain caused by sickle cell disease and its variants for a longer period than otherwise allowed.

You can read the entire bill here.