Help the Carolina Chapters With Profiles of Young Adults With MS for World MS Advocacy Day

Again this year, the Carolina Chapters will hold our MS Advocacy and Awareness Days at the North Carolina General Assembly and South Carolina State House in conjunction with World MS Day on May 29. The focus of the World MS Day campaign is “Young People and MS.”

Taking a day to spend at the legislature may not fit into your schedule, so instead we would like to understand how MS affects you and/or other young adults. Please answer the following questions to help the Carolina Chapters share your story. Feel free to answer the questions below in the comment boxes, or email them to nmss.advocacyintern@gmail.com.

• Were you or a family member diagnosed with MS as a young person (between the ages of 18-40?) If so, please explain how this impacted your daily life.
• The National Multiple Sclerosis Society supports many advocacy initiatives such as:  access to health insurance without discrimination, national funding for MS research and accessibility.   When you or your family member were between the ages of 18-40, did any of the these policy initiatives or another cause you to experience the effects of MS differently.
• Throughout the World MS Day campaign, people supporting the motto will be asked your motto.  What is your motto that helps you overcome obstacles and deal with the adversity posed by MS?

For more information about World MS Day, visit http://mymotto.worldmsday.org/en

N.C.Caregiver Relief Act

 Legislation has again been introduced to provide relief for caregivers where leave from work would not be afforded to them under federal law.  The Caregiver Relief Act, filed by Senators Kinnaird, Parmon, and Bryant and Representatives Adams and Hall, would extend the protections of the federal Family Medical Leave Act (FMLA) to allow eligible employees to care for a sibling, grandparent, grandchild, stepparent, or parent-in-law.  Should an employer offer FMLA benefits, the law allows for parent, spouse or child to take12 weeks of unpaid, job-protected leave.

2013 marks the 20th anniversary of FMLA and according to a fact sheet released this year by the NC Justice Center and NC Families Care, the FMLA is the "first and only legislation written specifically to help workers meet the dual responsibilities of family and work." 

The NC Chapters of the National MS Society recognize that the demands of caregiving are being shared by more and more family members and support Caregiver Relief Act.  Mary Bethel, Associate State Director for Advocacy for AARP North Carolina says it best, “Today’s reality is that we are a state of working family caregivers.”

Shortage in Neurologists Could Lead To Longer Wait Times for MS Patients

According to an article by Everyday Health, by 2025, the demand for neurologists will far outnumber the supply, which could create longer wait times for multiple sclerosis patients to see doctors for diagnostics and treatment.  Patients with neurodegenerative diseases like multiple sclerosis (MS), will have to wait longer to see a specialist. Right now patients wait an average of 30 business days for a follow-up visit.

The National MS Society recognized the trend several years ago.  The Society worked in partnership with American Academy of Neurology to support legislation which was never considered which would add neurology to the list of physicians eligible for the primary care incentive in the Affordable Care Act (ACA).  Also the Society offers clinical fellowships and other programs that we hope that will entice people to become neurologists.

To learn more about how the shortage in neurologists could affect you: read the full article here.  If you have experienced a wait time of more than 30 days to see your neurologist or travel more than 75 miles to see a neurologist, please post a comment sharing your story.

Town Halls in South Carolina Focus on Medicaid Expansion

Across South Carolina, people and organizations, that care about access to health care are taking part in town hall forums focusing on Medicaid expansion. From Greenville to Charleston, consumer health organizations, health care systems and SC citizens expressed their support for Medicaid expansion.  The National MS Society supports expanding Medicaid to ensure that 250,000 South Carolinians have health insurance to access primary care and prescription drug coverage. 

The South Carolina General Assembly is on furlough this week and next.  It is likely the Senate Finance Subcommittees will discuss the expansion with the state budget the week they return.   Continue to contact your elected officials with your support of Medicaid Expansion in South Carolina. 

Federal Budget Cuts Impact on Health Care & Research

Next week, over 300 MS Activists will head to the nation's capitol for the 22nd annual Public Policy Conference. By midnight today, across the board spending cuts mandated by congress (otherwise known as the sequester) will begin. Federal and state agencies will cut $85 billion in spending for the remaining months of this fiscal year.

While these cuts are 'across the board,' it is important to understand that these cuts probably won't be equal in all spending areas. While Medicaid is exempt from these cuts, most other health programs will be affected. The sequester includes a 2% cut to Medicare, as well as much larger cuts to federal healthcare agencies.

It is more important than ever to keep the MS Activist voice in the mix so that our elected officials recognize the importance of key MS priorities.

Below you will find a summary of the potential impact based on several  news reports:

• Medical Research Jobs: United for Medical Research estimates that up to 20,000 research jobs could be impacted,  or lost due to a $2.5 billion cut to the National Institutes of Health.
• NIH Research Grants: The NIH has predicted that nearly 2,000 ongoing or proposed research  projects may lose funding.
• Health Care Workers: The 2% cut to Medicare would result in the loss of over 200,00 health care jobs in 2013 alone, with 300,000 additional losses in subsequent years. 

To read more about the sequester's impact on healthcare, read this article by The Hill.

Employers Build Competitive Advantage by Engaging People with Disabilities

Companies that employ people with disabilities reap numerous benefits, according to a new publication from The Conference Board, Leveling the Playing Field: Attracting, Engaging and Advancing People with Disabilities. The report found that managers who have supervised an employee with a disability are overwhelmingly likely to recommend hiring works with disabilities, and that over ninety percent of consumers are more favorable toward companies that hire people with disabilities. The purpose of the report was to look at the ways employers are building competitive advantage through workplace practices that engage people with disabilities, including recent veterans and older workers.

Susane Bruyere, director of Cornell University's Employment and Disability Institute, confirmed that "employers report a number of indirect benefits that can result from hiring employees with disabilities, such as increased overall morale, productivity, safety, interactions with costumers, and attendance."  

Key findings of the report include: 

• Providing federally required accommodations for disabled employees is not expensive, and in many cases employers had no direct costs. 
• 87% of consumers agree or strongly agree that they prefer to give their business to companies that employ people with disabilities. 
• People with disabilites and their families represent a population of 54.7 million and earn an estimated $269 billion, representing a significant market in the United States.

To read more about the report click here.

Special Federal Insurance Program to Stop Enrolling New Members

 
Last week, the Obama administration announced that due to rising costs and limited funding, it would stop enrolling new members in a special $5 billion insurance program for people with preexisting conditions. The Pre-Existing Condition Insurance Plan (PCIP) was established in 2010 under President Obama's healthcare reform law. It was designed to provide coverage for suck people unable to find coverage in the  private insurance market.   

The U.S. Department of Health and Human Services (HHS) issued a notice saying it would suspend new enrollments to "help ensure that funds are available through 2013 to continuously cover people currently enrolled in PCIP." About 100,000 current PCIP beneficiaries are not affected by the change. Twenty seven state-run  High Risk Insurance Pools across the nation (including North Carolina)  are also closing enrollment to new members.

This news is especially disheartening as the North Carolina High Risk Insurance Pool, Inclusive Health, announced earlier this month that it has frozen enrollment to new members. Now that the state and federal options are no longer available, people will have to wait until January 1, 2014 when the Affordable Care Act will block insurers from turning away those with preexisting conditions. 

For details about this announcement click here.