Friday, July 27, 2012
We Need you!
Do you want to make a difference for those impacted by multiple sclerosis in PA? Check out our PA advocacy page for information on the new statewide Government Relations Committee. http://www.msactivepa.org/
Monday, August 8, 2011
Meeting With Legislators to Change MS
It’s almost time for recess in the U.S. Congress. To children and Congressmen alike, recess is a much needed break from work. But while children spend their recesses playing and having fun, your federal representatives are already gearing up for the next session.
The U.S. Congress typically breaks for recess during the month of August before beginning a new session in September. This lull in Congressional activity is an ideal time for public officials to hear from their constituents. As both a voting constituent and as an MS Advocate, you should take advantage of this opportunity to communicate with your legislator.
As busy as they may seem, public officials want to hear from their constituents. MS Advocates want to talk to their public officials. It’s a win-win situation, and following through is easier than you think.
If you want to reach out to your legislator, you have three easy and meaningful options. First, to make the greatest impact, we recommend scheduling an in-person meeting in your legislator’s office. Having a face to attach to a personal MS story is extremely influential.
Writing a letter or email to your legislator, or making a phone call are other effective ways to reach out, particularly if you have trouble accessing their physical offices.
If you choose to contact an official in the near future, the National MS Society has a few key issues we would like for you to address:
MS Research Funding in the Congressionally Directed Medical Research Programs (CDMRP)
Evidence is emerging that there may be a potential link between combat service and MS. More than 23,000 U.S. veterans have been diagnosed with MS, and while approximately $17 million in federal funding has been allocated to MS research in the CDMRP over the past four federal funding cycles, there is a clear need for more funding. We are asking Congress to support an additional $15 million in funding for research in Fiscal Year 2012.
Constituents hold a great deal of power in asking for this raise. The CDMRP is funded through the Department of Defense via the Defense Appropriations Act. Funding for it is added every year by members of Congress during the budget process, in response to advocates and disease survivors. As MS Activists, the more we address this issue, the greater chance we have of increasing its funding.
Improving Access to Neurological Care
To ensure individuals have appropriate access to primary care physicians, the Patient Protection and Affordable Care Act included a provisional bonus to attract more physicians to the field to match an increased demand in need for care. However, neurology is excluded from the list of physician specialties eligible to receive Medicare payment incentives. We request that Congress support corrective legislation introduced by Sen. Amy Klobuchat (D-MN) and cosponsored by Sen. Susan Collins (R-ME) that would allow neurologists to qualify for Medicare payment incentives.
The National MS Society believes that without proper compensation, the number of neurologists entering the field could decrease. This could have immense ramifications for people living with neurologic conditions, like MS, leaving them in danger of losing important specialized care. MS Activists are encouraged to speak to their representatives about the impact neurologic care has on MS patients, and how a Medicare payment incentive could improve patient access to quality care.
Adult Day Achievement Center Enhancement Act
Because MS can often be very disabling, individuals with MS can require considerable assistance with daily living. Family members are often the primary caregivers in this situation, often without any assistance. This can take a toll on caregivers’ personal live and finances.
One way to alleviate some of the stress on caregivers is through respite care and adult day centers. Adult day centers offer medical care, rehabilitation therapies, and assistance with daily living. By reducing medical care, hospital costs, and early admission to costly nursing home facilities, adult day centers can provide long-term savings to those living with MS.
The National MS Society urges its activists to encourage their representatives to support or cosponsor the Adult Day Achievement Center Enhancement Act. By creating a new grant program specifically designed to support adult day programs targeted at younger individuals with MS, the legislation has the potential to sustain and grow the current adult day program. Not only would this offer more extensive support to individuals with MS, but to their adult caregivers, as well.
Take advantage of the upcoming Congressional recess to talk to your local legislator about any or all of these issues. Remember, your story can make a difference. When a legislator receives as little as five or six constituent contacts about an issue, it elevates the issue and can create change. Let’s work together and use our stories to elevate MS-related issues to a higher level and create much-needed change.
For more information, download our In-District Legislator Visit Packet, or contact Jennifer Strayer, Public Policy Manager for the National MS Soceity at: (717) 586-8505 or Jennifer.Strayer@nmss.org
The U.S. Congress typically breaks for recess during the month of August before beginning a new session in September. This lull in Congressional activity is an ideal time for public officials to hear from their constituents. As both a voting constituent and as an MS Advocate, you should take advantage of this opportunity to communicate with your legislator.
As busy as they may seem, public officials want to hear from their constituents. MS Advocates want to talk to their public officials. It’s a win-win situation, and following through is easier than you think.
If you want to reach out to your legislator, you have three easy and meaningful options. First, to make the greatest impact, we recommend scheduling an in-person meeting in your legislator’s office. Having a face to attach to a personal MS story is extremely influential.
Writing a letter or email to your legislator, or making a phone call are other effective ways to reach out, particularly if you have trouble accessing their physical offices.
If you choose to contact an official in the near future, the National MS Society has a few key issues we would like for you to address:
MS Research Funding in the Congressionally Directed Medical Research Programs (CDMRP)
Evidence is emerging that there may be a potential link between combat service and MS. More than 23,000 U.S. veterans have been diagnosed with MS, and while approximately $17 million in federal funding has been allocated to MS research in the CDMRP over the past four federal funding cycles, there is a clear need for more funding. We are asking Congress to support an additional $15 million in funding for research in Fiscal Year 2012.
Constituents hold a great deal of power in asking for this raise. The CDMRP is funded through the Department of Defense via the Defense Appropriations Act. Funding for it is added every year by members of Congress during the budget process, in response to advocates and disease survivors. As MS Activists, the more we address this issue, the greater chance we have of increasing its funding.
Improving Access to Neurological Care
To ensure individuals have appropriate access to primary care physicians, the Patient Protection and Affordable Care Act included a provisional bonus to attract more physicians to the field to match an increased demand in need for care. However, neurology is excluded from the list of physician specialties eligible to receive Medicare payment incentives. We request that Congress support corrective legislation introduced by Sen. Amy Klobuchat (D-MN) and cosponsored by Sen. Susan Collins (R-ME) that would allow neurologists to qualify for Medicare payment incentives.
The National MS Society believes that without proper compensation, the number of neurologists entering the field could decrease. This could have immense ramifications for people living with neurologic conditions, like MS, leaving them in danger of losing important specialized care. MS Activists are encouraged to speak to their representatives about the impact neurologic care has on MS patients, and how a Medicare payment incentive could improve patient access to quality care.
Adult Day Achievement Center Enhancement Act
Because MS can often be very disabling, individuals with MS can require considerable assistance with daily living. Family members are often the primary caregivers in this situation, often without any assistance. This can take a toll on caregivers’ personal live and finances.
One way to alleviate some of the stress on caregivers is through respite care and adult day centers. Adult day centers offer medical care, rehabilitation therapies, and assistance with daily living. By reducing medical care, hospital costs, and early admission to costly nursing home facilities, adult day centers can provide long-term savings to those living with MS.
The National MS Society urges its activists to encourage their representatives to support or cosponsor the Adult Day Achievement Center Enhancement Act. By creating a new grant program specifically designed to support adult day programs targeted at younger individuals with MS, the legislation has the potential to sustain and grow the current adult day program. Not only would this offer more extensive support to individuals with MS, but to their adult caregivers, as well.
Take advantage of the upcoming Congressional recess to talk to your local legislator about any or all of these issues. Remember, your story can make a difference. When a legislator receives as little as five or six constituent contacts about an issue, it elevates the issue and can create change. Let’s work together and use our stories to elevate MS-related issues to a higher level and create much-needed change.
For more information, download our In-District Legislator Visit Packet, or contact Jennifer Strayer, Public Policy Manager for the National MS Soceity at: (717) 586-8505 or Jennifer.Strayer@nmss.org
Monday, August 1, 2011
What are Tier 4 Issues and what can you do about them?
Pennsylvania's Representative Vereb has introduced a House Bill regarding requirements for insurers relating to prescription drug coverage. This crucial bill was referred to the Insurance Committee, and has the potential to make specialty drugs that can treat MS much more affordable, therefore, more accessible, to thousands of people across the state.
Basically, when it comes to prescription drugs, as the prices rise, other states have experienced insurers creating cost-sharing methods known as “prescription drug specialty tiers.” These insurers usually use a three-tiered drug structure to provide fixed cost benefits to their insureds, based on three categories: generic, name-brand preferred, and brand-name non-preferred. As the tier levels increase, so do the prescription costs.
Medications to treat MS, however, fall into a specialty fourth (most costly) tier, where individuals are required to pay a co-insurance of anywhere from 20-35% of the drug cost. This places a significant financial burden on the insured individual and can discourage adherence to taking the medication as prescribed. The Pennsylvania House Bill on Tier Four issues (No. 1609) calls this “a structure where those who are sickest pay more, and those who are healthy pay less, thus, the creation of specialty tiers is a discriminatory practice.”
This Pennsylvania House Bill is the first bill of its kind to be introduced in Pennsylvania. Prior to this state-level bill, all efforts to address this practice were made on a national level.
Most recently, in 2009, the National MS Society, along with other like-minded organizations, collaborated with U.S. Senator John D. Rockefeller (D-WV) to introduce the Affordable Access to Prescription Medications Act (S. 1630). Its efforts were to reform prescription drug coverage at a national level, through methods such as establishing monthly caps on out-of-pocket costs for prescriptions, lowering co-payments for up to 10% of Americans with the highest prescription costs, and amending the process through which individuals can request an exception for specialty tier drug coverage.
However, that bill was never passed, and is considered “dead” in the current session of the U.S. Congress.
House Bill 1609 introduced the issue at a state level. Like the National bill S. 1630, the Pennsylvania bill aims to reduce costs for insureds by instituting co-pay and payment restrictions, making insurers take the bulk of financial responsibility for costly medications. Limiting extreme financial burdens on patients will increase accessibility to much-needed specialty drugs to fight MS.
A hearing will be held when the House reconvenes in September. Hearings play a significant role in the passing of a bill such as this one. Their purpose is to gather and present more information to representatives so they can develop an informed position on the issue. Testimonies by organizations such as the MS Society and individuals afflicted with MS will be especially helpful; they validate the bill by proving to representatives that the issue does affect real people, and there are organizations who stand behind it.
Testimony from those affected by Tier four prices will be essential to pass such a bill. Utilizing real stories is the most effective way to move this key piece of legislation. These stories will provide representatives with real accounts of how many people are affected by expensive drug prices and how this bill could change that. Access to prescription drugs is critical for those with MS; if you or someone you know has had cost-related issues getting the prescription drugs they need, please share your story.
Whether you come to Harrisburg to testify in person, or write or tell your story to staff of the National MS Society who can testify on your behalf, you can greatly impact the decision. You can change legislation and make MS treating prescription drugs more affordable to those who need them.
For more information, contact Jennifer Strayer, Public Policy Manager for the National MS Soceity at: (717) 586-8505 or Jennifer.Strayer@nmss.org
Basically, when it comes to prescription drugs, as the prices rise, other states have experienced insurers creating cost-sharing methods known as “prescription drug specialty tiers.” These insurers usually use a three-tiered drug structure to provide fixed cost benefits to their insureds, based on three categories: generic, name-brand preferred, and brand-name non-preferred. As the tier levels increase, so do the prescription costs.
Medications to treat MS, however, fall into a specialty fourth (most costly) tier, where individuals are required to pay a co-insurance of anywhere from 20-35% of the drug cost. This places a significant financial burden on the insured individual and can discourage adherence to taking the medication as prescribed. The Pennsylvania House Bill on Tier Four issues (No. 1609) calls this “a structure where those who are sickest pay more, and those who are healthy pay less, thus, the creation of specialty tiers is a discriminatory practice.”
This Pennsylvania House Bill is the first bill of its kind to be introduced in Pennsylvania. Prior to this state-level bill, all efforts to address this practice were made on a national level.
Most recently, in 2009, the National MS Society, along with other like-minded organizations, collaborated with U.S. Senator John D. Rockefeller (D-WV) to introduce the Affordable Access to Prescription Medications Act (S. 1630). Its efforts were to reform prescription drug coverage at a national level, through methods such as establishing monthly caps on out-of-pocket costs for prescriptions, lowering co-payments for up to 10% of Americans with the highest prescription costs, and amending the process through which individuals can request an exception for specialty tier drug coverage.
However, that bill was never passed, and is considered “dead” in the current session of the U.S. Congress.
House Bill 1609 introduced the issue at a state level. Like the National bill S. 1630, the Pennsylvania bill aims to reduce costs for insureds by instituting co-pay and payment restrictions, making insurers take the bulk of financial responsibility for costly medications. Limiting extreme financial burdens on patients will increase accessibility to much-needed specialty drugs to fight MS.
A hearing will be held when the House reconvenes in September. Hearings play a significant role in the passing of a bill such as this one. Their purpose is to gather and present more information to representatives so they can develop an informed position on the issue. Testimonies by organizations such as the MS Society and individuals afflicted with MS will be especially helpful; they validate the bill by proving to representatives that the issue does affect real people, and there are organizations who stand behind it.
Testimony from those affected by Tier four prices will be essential to pass such a bill. Utilizing real stories is the most effective way to move this key piece of legislation. These stories will provide representatives with real accounts of how many people are affected by expensive drug prices and how this bill could change that. Access to prescription drugs is critical for those with MS; if you or someone you know has had cost-related issues getting the prescription drugs they need, please share your story.
Whether you come to Harrisburg to testify in person, or write or tell your story to staff of the National MS Society who can testify on your behalf, you can greatly impact the decision. You can change legislation and make MS treating prescription drugs more affordable to those who need them.
For more information, contact Jennifer Strayer, Public Policy Manager for the National MS Soceity at: (717) 586-8505 or Jennifer.Strayer@nmss.org
Monday, July 11, 2011
Become an MS Activist
More than 25,000 people throughout Pennsylvania are living with Multiple Sclerosis, a chronic and debilitating disease that attacks the central nervous system. My grandmother is one of those 25,000.
As her MS has significantly worsened over the past few years, I decided that I wanted to help the MS cause in any way possible.
My first MS volunteer opportunity was with my aunt and cousin at the 2010 MS Mud Run in Brandywine, PA. It was hot, humid, and, frankly, a bit painful – and I wasn't even running it! I knew, though, that if my grandmother could deal with years of pain and discomfort, who was I to complain after a single day? I considered taking a single day out of my life to join the MS movement and raise awareness the very least I could do.
A year later, I found myself searching the Central Pennsylvania Chapter website for more volunteer opportunities and discovered the opportunity to intern under the umbrella of Public Policy and Social Media. Most college students would balk at the circumstances: I'm not getting paid, nor am I getting any college credit. Yet I decided to approach the internship as yet another volunteer opportunity, so here I am blogging about being an MS Activist.
I don't commit every weekend to participating in volunteer events. I don't run every race or walk every walk. As a student, I don't have much money to donate. How is it possible that I, who only does a limited amount of advocacy work, consider myself an activist?
Because it's simpler than you think.
Any act of advocacy, big or small, can significantly impact the lives of those living with MS. Becoming an activist doesn't mean you have to bike 30 miles or donate a large sum of money (although you're more than welcome to!). In fact, smaller acts can have just as lasting of an impact.
Easy ways you can be an MS Activist:
- Write, email, or call your local government official and encourage them to do something about the lack of funding for MS research
- Distribute the MS Activism brochure “Federal Advocacy” around your neighborhood
- Read and post comments on MS Activism blogs
- Write a letter to the editor or call local talk radio programs to make a public call for action
- Attend a town hall meeting to discuss an MS issue recommended by your chapter advocacy staff
- Sponsor a participant in a MS fundraiser – no contribution is too small.
Mahatma Gandhi once said, “Be the change you want to see in the world.” With state funds decreasing and the needs of those with MS increasing, it falls upon everyday citizens to act as advocates. As busy as we are in our day-to-day lives, becoming an activist can take an insignificant amount of time, but make a huge difference.
Visit msnbc.com for breaking news, world news, and news about the economy
Click to see FOX News meterologist Janice Dean share her story of living with MS with NBC’s TODAY on June 22, 2011.
PA's Collaborative Action Network is now blogging!
Welcome to the National MS Society’s Pennsylvania Collaborative Action Network (PA CAN) blog page! Focused on issues important to people living with MS in Pennsylvania, we set up a blog to share news and provide advocacy information.
We are the Pennsylvania Collaborative Action Network (PA CAN), a collaboration of people who want to do something about Multiple Sclerosis now. Led by the three Pennsylvania chapters of the National MS Society (Western Pennsylvania, Central Pennsylvania and Greater Delaware Valley), the PA CAN represents more than 25,000 people living with MS throughout the state. Since MS is a disease that affects the entire family, however, we estimate the representation of the PA CAN to be closer to 57,000 Pennsylvanians.
In the course of this blog, we will be providing information about important issues facing individuals with MS like:
Health Care
Disability Rights
Long Term Care Services
Respite Services
Adult Protective Services
Research
We will be sharing information about advocacy work and ways you can raise awareness. For those interested, there will be opportunities to guest blog about important MS issues.
For more information, check out our activist website.
If you are interested in guest blogging, or would like to get involved, send us a message or contact Jennifer Strayer of the PA CAN at: (717) 586-8505 or Jennifer.Strayer@nmss.org
We are the Pennsylvania Collaborative Action Network (PA CAN), a collaboration of people who want to do something about Multiple Sclerosis now. Led by the three Pennsylvania chapters of the National MS Society (Western Pennsylvania, Central Pennsylvania and Greater Delaware Valley), the PA CAN represents more than 25,000 people living with MS throughout the state. Since MS is a disease that affects the entire family, however, we estimate the representation of the PA CAN to be closer to 57,000 Pennsylvanians.
In the course of this blog, we will be providing information about important issues facing individuals with MS like:
Health Care
Disability Rights
Long Term Care Services
Respite Services
Adult Protective Services
Research
We will be sharing information about advocacy work and ways you can raise awareness. For those interested, there will be opportunities to guest blog about important MS issues.
For more information, check out our activist website.
If you are interested in guest blogging, or would like to get involved, send us a message or contact Jennifer Strayer of the PA CAN at: (717) 586-8505 or Jennifer.Strayer@nmss.org
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