Happy Friday! Top Tweets of the Week!

It has been a busy week! If you blog or have a Twitter account and are living with MS in North Carolina, NCActivisMS would like to follow you! Request to follow us on Twitter @NCactivisMS to stay up to date on current developments and news pertaining to people living with MS in North Carolina! We will follow you back! Happy Friday!

• RT @NMSSEasternNC The Department of Veterans Affairs (VA) has opened a toll-free National Caregiver Support Line to assist... http://fb.me/uu7y8N7v
• UNC Researchers recent findings could lead to new treatments in patients who are in the early stages of MS. http://ow.ly/3NutW 
• RT @mssociety Doctor Challenges Cause Of #MS And Treatment @NPR featuring blogger Wheelchair Kamikaze http://bit.ly/fNGbe1 #MSMonday #CCSVI
• RT @politico Jumping into the high-risk pools. http://politi.co/eCdF9w
• RT @NCCapitol Good read: MT @jonathankappler: poli sci research on Voter IDs from Western Carolina's Public Policy Institute http://bit.ly/hhJqeK #NCGA

A Development In Health Care Reform That Is Actually Developing!

Congressional contention over health care reform continues...
This is the general drift delivered by the major media outlets--over and over again--which, allows ME to share the REAL news in health care with you!  MS activists, prepare to take an active roll in the current Comparative Effectiveness Research Program.

The basic idea behind the program is: rather than testing something, either a treatment or an accepted practice in the health care industry, to see if it works, we should start comparing approaches to find what works best.  A refreshing change from the norm, this program passed in 2009 after the Federal Coordinating Council on Comparative Effectiveness Research (CER) and the Institute of Medicine (IOM) gave their report to Congress. They outlined ten steps to implementing this program.  These recommendations call for public involvement on several levels.

The first five steps are already completed. Step two called for, Public input in the delineation of research questions. The committee prioritized the 1546 nominations, creating a top 100 list, which they divided into quarters. Multiple Sclerosis is addressed in the third quartile. Additionally, several questions focus on aspects of chronic conditions, issues relevant to the MS community, such as acute care, MRI's, medical home and remote patient monitoring, just to name a few. I invite you to view the entire list by clicking here.

The next five steps create many areas for public engagement; most clearly outlined in step six: The CER program should fully involve consumers, patients, and caregivers in key aspects of CER, including strategic planning, priority setting, research-proposal development, peer review, and dissemination. The New England Journal of Medicine (NEJOM) published an excellent article where you can find the full listing of CER steps as well as the NEJOM's recommendations.  Most noteable, their recommendations regarding step ten states, "Public investment in health information technology and data infrastructure can facilitate ongoing surveillance. Moreover, with changes in the environment --such as new technology, changes in the health care system, or patients' needs-- the CER program should periodically update its list of high-priority topics."

There are several opportunities for you to be involved in this movement. Start by knowing the facts and keeping up with current events (check this blog, or follow us on twitter for updates!). From there, contact your Senator or Representative to discuss the CER Program and the direction you would like to see it move. Share your knowledge by taking advantage of the local media by writing a letter to the editor, or call your local news or favorite radio station. Also, take advantage of your social networks to share your knowledge and encourage others to get involved!

As always, we are eager to answer any questions you may have and would love to hear your comments on this issue as well as how you plan to act. Feel free to leave a comment, or call your local chapter.

Need Help With Inclusive Health?

The North Carolina legislature created Inclusive Health to help provide insurance to the approximately 200,000 NC residents that have preexisting conditions or lack access to affordable medical coverage. 4,000 applications have been approved since the program's inception. Inclusive Health agents will visit Brunswick and Columbus county later this week to answer questions and help people enroll. These counties were chosen with expectations that many residents would qualify for Inclusive Health Assist, a program offering discounted premiums to individuals falling 300% below the poverty line. Be sure to look into these programs because although it is not all income based, it is first come first serve.

Events like this will continue being scheduled across the state, announcements are posted on the Inclusive Health Facebook page. The Inclusive Health Website has an excellent FAQ page too. People diagnosed with MS should look over these resources, and if you may be eligible, or still have questions, click here to find an agent in your county to further assist you.

NC Recieves Funds To Expand Patient-Centered Medical Homes

North Carolina will surely benefit from the expansion of our Community Care Network's patient-centered medical homes. Individuals served by this program have high medical needs. Assistance is provided in transition from different care settings, in dealing with complex medical and social situations, and by enhancing physicians' practice's ability to manage patients with chronic conditions such as MS. The program also assists families and patients in the self-management of their disease, a vital component to maintaining a high quality of life for people with MS. Both Governor Bev Perdue and Senator Kay Hagan worked as advocates for the initiation and expansion of Community Care Networks. In an recent press release, Governor Perdue explains that our medical home care system can improve the quality of care while still reducing costs, she goes on to add that, "North Carolina's innovative solutions continue to be recognized nationally."
Click Here for more information on NC Community Care Networks.

How My Health Care Costs Affect Others *by Alex O'Connor

February 3, 2010
How My Health Care Costs Affect Others
by Alex O'Connor

Posted to activisMS on Friday, February 5, 2010

My health care costs take up a large portion of our income. You may say “So that is your problem”. Actually it becomes a lot of peoples problems. I have five animals who do not get yearly exams and dental cleanings like they used to. The veterinarian is losing hundreds of dollars. Multiply that by other clients who are cutting back and he may have to cut back and lose an employee. Then that employee suffers. I canceled all service contracts with plumbing, hvac, and pest control companies. Again if others have to do the same those companies will lose employees. Some of these employees will lose insurance adding to the health care problem. I rarely get a hair cut any more. Clothes come from the Goodwill. We will not buy another car until the house is paid off in ten years. We will not be going on vacation. I have not flown since the eighties. The mall is a place to walk for exercise in bad weather. Even the hardware store is seeing less of us. I closed down most of my credit cards so banks and stores are not making money on interest. Eating out is rare and far between. If you work in fast food you are out of luck with my business. I even had to quit my yoga class due to cost.
I used to give to charity. Now I have nothing to spare. Yes many people and organizations are hurting as more and more of us have to put a large portion of our income into our medical costs. It is no different for a State or the Country.

Long-Term Care Services & Supports You Should Know About !

Nearly a quarter of individuals living with MS will require long-term care support and services at some point during the course of their disease. In the past decade, North Carolina's long-term services have suffered due to increased service costs and a rising demand for assistance. Luckily, North Carolina received a new line of funding and the Office of Long-Term Services and Supports, a division of the NC Department of Health and Human Services, has a plan to revamp the processes of applying for as well as issuing aid. New procedures encourage integration both in the delivery of care as well as the handling of information.

The grant provides funds for a number of new programs. The Community Resource Connection or CRC is a program available in several counties. The CRC is a unique state program because it strictly believes in a person-centered approach that acknowledges the needs of individuals and their care-givers. (Did you know that one in five Americans provide care to another adult?) Also, the CRC is part of the No Wrong Doors Policy, a policy that aims to reduce departmental overlaps. Additionally, it allows citizens a linear path in acquiring services and enables state departments to cooperate by sharing information. This eliminates unnecessary paperwork, reduces wait periods, and therefore serves more people, quicker, and at a lower cost per unit without compromising quality of care. One No Wrong Doors amenity that I strongly suggest taking advantage of is NC CARE. Another policy provided is Living Healthy, which provides Chronic Disease Self-Management Programs, that are scientifically proven to positively impact participants.

Additionally, late last year, North Carolina received a federal grand for the Lifespan Respite Care Program. According to the project summary, collaborations between a number of departments within the Department of Health and Human Services, "seek to enhance and expand the quality and availability of lifespan respite services for all age groups throughout NC."

The Future of Long Term Care

What is long term care?

About twenty-five percent of people living with MS, at some point, need long-term care. Long-term care is a combination of support and services that work together to meet an individuals ongoing health, social and personal needs. Programs offering such care are extremely expensive. For individuals without a chronic illness such as MS, Long-term care insurance is one way to cover expenses. What about individuals who are unable to pay 1,000-3,000$ a year in premiums, or for other reasons are denied access to coverage?

Medicare and Medicaid fall under the United States Department of Health and Human Services. Medicare does not pay for long-term care, but Medicaid does. The current budget crisis is leading government officials to search for ways to lower costs while offering quality coverage to citizens. Currently, support and services cost at least 30,000$ a year per individual, and Medicaid is the county's largest payer of long-term care.

Some approaches the government is investigating include:
-expanding Medicaid
-developing new programs under the Home and Community Based Services wavier program
-coordinating programs, services and providers that currently overlap

We will have a follow up post to present current government debates on health care reform in relation to long-term care.

Also, I urge all readers to take a look at the NMSS's guide to
self-advocacy for access to health care coverage! Share it with a friend, and feel free to comment or post questions. This is an exciting time to be passionate about change!

Inclusive Health Update

On January 12, Michael Keough, the Executive Director of Inclusive Health, gave an annual update to the Joint Legislative Health Care Oversight Committee. Inclusive is North Carolina’s high risk insurance pool. To be eligible for coverage, the law states you meet one or more of the following:

1. have been denied coverage due to medical reasons, or offered
limited coverage on preexisting conditions.
2. can only receive coverage at a higher rate than Pool offers.
3. are receiving or eligible for HIPAA.
4. are diagnosed with a condition from a list on high-risk conditions.
5. are eligible for federal Health Coverage, for example, trade-displaced
workers.

Individuals with chronic illnesses, such as MS, often fall into one of the first two groups. The fourth point is important to note because it adds an element of convenience to the process and reduces unnecessary paperwork -- if you know you will be denied coverage, due to a preexisting condition or diagnosis, Inclusive Health won’t make you prove it.

Inclusive Health went into effect January 1, 2009, and has made considerable progress. Over the last year, 2,506 North Carolina residents have enrolled in the Pool. The denial rate is low, around 15%, and mostly due to applicants qualifying for other types of coverage. Enrollment, which is directly linked to income, is higher than expected in central and western counties. Marketing efforts are being looked at to find what ways can best reach the counties in eastern and southeastern North Carolina.

A recent and exciting development took place in November -- applications for a premium subsidy, Inclusive Health Assist, were accepted. The subsidy is funded by a federal grant and will provide discounts between 20-43% for and individual making 33K or a couple making 43K a year. More than 330 individuals have already accessed this assistance.

Continued health care reform discussions remain a topic of interest for Inclusive Health staff. For a comparison of how the US House and Senate have addressed high risk insurance pools, please visit here. To share your thoughts on high-risk insurance pools within the current health care bills, please leave a comment below.

Click here for more information on how Health Reform efforts are addressing Interim High-Risk Pools