News

While most state sessions have come to a close for the year, we’re excited to announce the passage of paid family leave legislation in Maine, access to medication legislation in Texas and home healthcare worker pay legislation in Ohio. In 2023 MS Activists have helped pass 39 bills across 20 states.  
 
OHIO:
On Tuesday, July 4, 2023, Governor Mike DeWine signed Ohio’s fiscal year 2024-2025 operating budget bill into law. With this comes the passing of an amendment to House Bill 33 which will requires the state to provide for provider rate increase funding to ensure workforce stabilities and greater access to care for Medicaid recipients through increased wages and workforce supports. The exact numbers used for wage increases for workers will be implemented through administrative rules.

MS Activists acted in support of an increase in wages by holding meetings with legislators during State Action Day and sending email alerts with the National MS Society, as well as providing testimony.
In 2020, 48% of direct care workers were earning less than 200% of the poverty level. With this rate of pay, these workers seek other employment, leaving this field with a shortage of workers and the people who need assistance without the care they need. 

The Bureau of Labor Statistics anticipates that the need for this workforce will increase by 25% from 2021 to 2031. With up to 25% of those living with MS requiring long-term care services at some point in their lifetime, it is imperative that direct care workers receive competitive compensation for the services they render. 

TEXAS:
On June 10, 2023, Governor Greg Abbott signed House Bill 999 into law and will take effect September 1, 2023. This legislation will reform Copay Accumulator rules to ensure all forms of payment, including copay assistance programs, count toward a patient's deductible and out-of-pocket maximum (OOP). 

Over 100 MS Activists acted in support of this legislation as a part of MS State Action Day by sending emails, posting on social media and holding meetings with lawmakers at the Capitol. 

A copay accumulator program prevents a patient who is receiving copay assistance from applying those funds toward their deductible or OOP requirements. There is currently a growing number of insurers and pharmacy benefit managers (PBMs) who are implementing them. In doing so, patients have a harder time meeting their deductible or OOP which then results in higher overall costs. Oftentimes, patients aren’t even aware that their health plan includes a copay accumulator program, leaving them surprised when it’s time to obtain their medication(s) from the pharmacy. 

Passing House Bill 999 is a crucial step toward making MS medications affordable for the 70% of people living with MS who rely on copay assistance.  

MAINE:
On July 11, Maine Governor Janet Mills signed LD 1964 into law, establishing a paid family leave and medical benefits program (paid leave) in the state of Maine. MS Activists worked in coalition to help pass this bill including contributing letters to the editor and communicating with their elected officials. 

Once LD 1964 takes effect in 2026, nearly all Maine workers will be eligible to take up to 12 weeks of paid leave as long as they meet the qualifications laid out in the legislation. Workers who qualify will received 90% of their regular income up to half of the state’s average weekly wage (currently $518) and after that amount would receive 66% coverage of their regular income up to the cap, which is equal to the state’s full average weekly wage (currently $1,036). Money is paid out through the Paid Family and Medical Leave Insurance Fund, which is kept solvent through a payroll tax on both the employee and the employer, though employers with less than 15 employees are exempt from paying (their employees still pay in and qualify for paid leave). 

LD 1964 is an important step in creating a more equitable Maine and helping to ensure that those living with MS can continue to take care of their health while living productive lives, all without the fear of financial hardship. 
Most people with MS are diagnosed between the ages of 20 and 50—prime working years. People living with MS often continue working long after their diagnosis, but some may need time away from work to manage an unexpected change in health. Additionally, many may need time away to help support the care of a loved one or a new addition to the family. Paid leave allows for this time away, while making sure individuals are able to continue to support themselves financially.