Monday, February 25, 2013


Hi all – I could have called this the ‘Countdown to Sequester’ edition but thought better of it.  Who knows, maybe they will kick the sequester can down the road another month or two!

President’s Day – Fun Facts.  Monday we observed the holiday and this week I ran across this U.S. Census tidbit about how many places are named after presidents.  Benjamin Franklin, while never a president, ranks as second most named after.  Interestingly ‘Clinton’ is at #7 however this survey doesn’t identify whether the entity was named after the actual president  (remember our fourth Vice President George Clinton was also a six term, non-consecutive, Governor of NY serving a total of 21 years, plus his two stints as VP under different presidents).  For other trivia you can buy a copy of “The Smithsonian Book of Presidential Trivia” released last month.

State of the Union ‘Dumb Down’  The Guardian took a look at all of the states of the union and gave them a reading level score.  The highest?  James Madison at 21.6.  The dumbest?  George H.W. Bush at 8.6 with Barack Obama next at 9.2.  George Washington scores pretty well, coming in at 11th highest out of the 41 addresses.

Mapping the Human Brain.  President Obama announced plans for an ambitious program to map the human brain, putting the kind of muscle needed to achieve results similar to the human genome project.  This effort could provide a significant research boost for diseases like Parkinson’s, MS and Alzheimer’s to name a few.  The human genome project cost approximately $3.8 billion but in a 2010 study it was found that $800 billion in economic activity had been generated because of the project.

Sequestration on (everyone’s) mind.  At least in DC it is – barring a last minute deal that doesn’t look forthcoming, automatic spending cuts will start on March 1.  Approximately $85 billion in cuts, $46 billion of which will come from defense spending.  Some are saying this is the best of the worst proposals out there, others predict the cuts will last for a few weeks until the public anger flares giving Congress the impetus to act.  The House GOP doesn’t fear any blowback on the cuts.  In the meantime the president is ramping up pressure for a ‘sequester fix.’  This week he said sequester would be like taking a ‘meat cleaver’ to the budget.  NIH Director Collins is mincing no words, stating that these are just ‘dumb’ cuts

Obama Outreach.  The most recent development is that President Obama made calls to Speaker Boehner and Minority Leader McConnell to discuss sequestration and what can be done to avoid it.  The White House published its view of the impact of sequestration on its website.

Research Funding Threat.  Should the sequestration happen, agencies will be directed to cut budgets by a certain amount.  There is a real threat however in that the agencies have flexibility to choose what to cut so for example, CDMRP programs in the Department of Defense could be zeroed out in a worst-case scenario.  NIH will be able to choose which of its institutes to trim which will determine which research projects continue unchanged, or changed.

Retirements.  Our 2011 Senator of the Year, Mike Johanns of Nebraska, announced last weekend that he is not seeking re-election.  This is his first term in the Senate and he previously served as Governor and U.S. Secretary of Agriculture.

HUD-HHS Rental Assistance Partnership for Persons with DisabilitiesFebruary 12 Departments of Housing and Urban Development (HUD) and Health and Human Services (HHS) announcement. The 13 states are California, Delaware, Georgia, Illinois, Louisiana, Massachusetts, Maryland, Minnesota, Montana, North Carolina, Pennsylvania, Texas and Washington.  Learn more here.

Not a Cure for Death, but . . .   New research shows that as a person consumes more coffee, he or she puts off their own mortality.  Can’t wait to see the new ad campaigns coming out of Starbucks, Seattle’s Best, Caribou, etc.!

Public Policy Conference.  The National MS Society Public Policy Conference is right around the corner and we’re pleased that former Senator Byron Dorgan, former founding co-chair of the MS Caucus, will join us to kick it off!  Also, nationally renowned pollster Celinda Lake will be our lunch speaker on March 5.  Looking forward to seeing 300+ Activists, and the wave of orange on the Hill March 6!

Health Reform Implementation News:

  •  HHS Issues Final Rule on the Essential Health Benefits:   Many MS activists have been involved in the complex process of defining the ‘essential health benefits’ that all individual and small group health plans will have to cover in new plans sold in their state in 2014 and beyond.  Tens of thousands of stakeholders submitted formal comments to HHS as they crafted the federal regulations outlining them, and clarifying the federal government’s role vs. the states.  With the release of HHS final rule yesterday, it seems the federal government’s role is nearly complete.  Read about it here.   
  • Confused about Medicaid and its role in implementing the Affordable Care Act? You’re not alone!! So, the Centers for Medicare and Medicaid published this new list of Frequently Asked Questions
  • State Pre-Existing Condition Insurance Pools No Longer Accepting New Enrollees:   Because the ACA’s requirement that health insurers must accept applicants regardless of their pre-existing condition doesn’t go into effect until 2014, the ACA included a special health insurance program for un-insured people as a stop-gap measure to tie them over.  Known as the Pre-Existing Condition Insurance Program (PCIP) these temporary health plans were always intended to fade out when their enrollees gained new coverage options in 2014.  That phase out process has now begun with the announcement that the PCIPs are set to stop accepting new applicants on March 2, 2013.  Existing enrollees will continue to be covered until next year. 
  • Florida in? Governor Rick Scott of Florida is the most recent governor to announce support for expanding Medicaid in his state.  He was one of the most vocal opponents of Medicaid expansion and the Florida Attorney General played a key role in the lawsuit that resulted in the Supreme Court saying that expansion needed to be optional.

 By the next issue of Federal Fridays, we’ll know whether Congress and the Administration averted yet another potential
budget/fiscal/economic crisis.  I’d ask your opinion of that however I have a feeling I know what most non-elected people feel already!

Thursday, February 14, 2013


Virginia’s Department of Aging and Rehabilitative Services made a big announcement last week, reporting that caregivers for a loved one with disabilities or chronic illness in Virginia could apply for vouchers up to $400 to help pay for respite care. This is positive, real world impact stemming from the excellent work of MS activists.  

The state’s grant is funded by the Lifespan Respite Care Program, a federal program which provides grants to state agencies to ensure that quality respite is available for family caregivers across the lifespan. Every year, MS activists advocate for Congress to fund the Lifespan Respite Care Program.  Since it has been funded the past few years, Virginia was able to apply for and receive this grant funding that is now supporting family caregivers in the state.

Virginia’s family caregivers are not alone. According to a 2011 AARP report, 61.6 million family caregivers provided care at some point during 2009. This includes family members of people with MS, as well as many other conditions and diseases. Family caregivers enable loved ones to stay at home, keep families healthy and save the system money. The value of family caregivers’ uncompensated services is estimated to be $450 billion a year.

Activists in Virginia attended Virginia Caregiver Coalition meetings and met with various public officials such as the Commissioner of the Department of Rehabilitative Services to highlight the need for this grant and urged them to apply for federal funding. Congrats to these activists and the state—their advocacy efforts made a difference!

The grant will distribute vouchers until the end of July in Virginia and the Department of Aging and Rehabilitative Services estimate that as many as 450 families could be served through this grant.

If you are resident of Virginia and are interested in applying for a voucher, please click here.

Monday, February 11, 2013


Hey all – here’s the latest Federal Fridays and I think there’s a lot of good stuff in this edition including reference to a Unicorn . . . yes, Unicorns.  The ongoing budget battles, state of the Union, sequestration and several items pertaining to telemedicine/telehealth are part of this edition so enjoy a cup of coffee and have a quick read.  And for those interested in health reform implementation items, be sure to scroll to the bottom for recent updates. 

State of the Union.  Next week President Obama gives his state of the Union and it sounds like he’s in combat mode about the sequester and the GOP controlled House of Representatives.  Note that if nothing is done, automatic spending cuts begin March 1 – a year of cuts crammed into a 6 month time frame.  Efforts are underway by the Administration to propose a smaller package of cuts to buy more time for a ‘big solution’ and Congress is preparing a ‘continuing resolution’ to keep government open while it continues to try and hammer out a solution.

Deficit is shrinking, but . . .  You remember Harry S Truman’s desire for a one handed economist right?  Well, the CBO reports that the deficit is shrinking however there are mixed results when looking deeper into the longer-term situation.  (And if you don’t know about the one handed economist reference, Google it!)

20,000 jobs threatened.  That’s according to a study by United for Medical Research, suggesting that if automatic spending cuts take place beginning March 1, 2013, 20,000 research related jobs could be lost.  In Illinois they stand to lose approximately $62 million in NIH research funds. 

Director’s Blog, Star-date 2013.  (okay, really lousy effort at humor).  NIH Director Frances Collins has begun publishing his own blog.  You can check it out here and also sign up to receive via email.  In his blog yesterday he has a chart showing the number of clinical studies being held in all 50 states ranging from 283 in Wyoming to over 18,000 in California.

Health Reform 2.0.  Former GOP Senator Dave Durenberger penned an op-ed in Politico highlighting the need for additional reforms to the system including the Medicare payment system, addressing the high cost of prescription drugs, and creating competition in the increasingly un-competitive private market.

Office of Wireless Health.  California Rep. Mike Honda has introduced a bill to create this office within the FDA.  The office would be tasked with regulating the growing number of mobile, wireless health gadgets and applications.

Comprehensive Telehealth Scan.  Thanks to Stewart Ferry from California for sending along a link to this comprehensive scan of the 50 states and DC by the Center for Connected Health Policy summarizing where each jurisdiction is on virtually everything telehealth/telemedicine as it relates to access, reimbursement, licensure, etc.  The Commonwealth Fund published a summary of successes among early adopters of telehealth.

Senator ‘Unicorn’?  Lawmakers Let Their Hair Down.  Even with all the budget chaos and political divisions in the country, members of the House and Senate recently spent some quality time ‘ribbing’ each other at the Washington Press Club dinner.  See some of the zingers here.

Low Vision Issues?  NIH’s National Eye Institute has produced a 20 page large print booklet “Living with Low Vision” that includes information on seeking help for low vision as well as tips to maximize remaining eyesight.  2.9 million Americans live with low vision with an expected 73% increase by 2030.

Veteran’s health care.  Vet’s groups are lining up to urge Congress and the Administration to make good on longstanding health care commitments to them and their families.

A billion here, a billion there . . .   Yes, soon it adds up to real money.  A recent audit found that the VA overpaid disabled vets by nearly $1 billion between 1993 and 2009 and if the agency doesn’t correct the problem, they will overpay another $1.1 billion by 2016.

Snow Drought.  For our friends in the Northeast this will be of no comfort, but the DC area has a ‘snow drought’ which comes with side-effects.  The area has gone 744 days without two inches of snow.
FMLA turns 20.  This week President Clinton was at the U.S. Department of Labor celebrating 20 years since he signed the Family and Medical Leave Act into law.  It was a significant advancement in worker’s rights however one analysis suggests that the U.S. seriously lags the rest of the other high income nations when it comes to leave.  Lag is apparently an understatement though, we’re dead last. 

‘Activated Patients’ fare better.  A recent study showed that patients who participated in treatment decisions and took part in managing their own care―had significantly lower costs than those who were the least activated.

Health Reform Implementation News:

  • Projecting the ACA’s impact:  New projections by the Congressional Budget Office suggest fewer of the currently un-insured will gain coverage, at least in the first few years.  Their most recent projections suggest approximately 27 million are likely to gain coverage by 2017, a full five million less than projected a year ago.

  • New Q and A on Medicaid and the ACA:  HHS issued a five page Q and A updating and clarifying some pretty complex Medicaid topics.  Fortunately, ACA guru and Washington & Lee Law Professor Tim Jost blogged about it so regular folks have a better shot at actually understanding it.

  • Let the Sun Shine In!  Part of the Affordable Care Act was designed to allow anyone to look up which doctors are getting how much from which companies.  But regulators have had so much on their hands, that the so-called ‘Sunshine Act’ was put on the back-burner for a while.  New regulations issued this week were welcomed as one of the ACA’s more important transparency measures.   The law firm Holland & Knight posted this analysis.

  • HHS Rejects Mississippi’s Exchange Proposal:  The Administration’s rejection of the state’s bid to run its own exchange means it will have to run a Federally-facilitated exchange instead.

  • Tracking Medicaid Expansion Decisions:  Check out the chart in  the National Academy for State Health Policy’s most recent e-news.    
Have a great week! If anyone wants to help the 'Wonky Walkers' Walk MS team, please feel free to click here.