News
October 2011 Monthly Advocacy Update
NEW VIDEO & BLOG
To mark its 10th anniversary ACS CAN produced a new video featuring ACS CAN volunteers, lawmakers, and others. ACS CAN is also launching a new blog on its website: Cancer CANdor. Cancer CANdor, which I will author, will highlight ACS CAN accomplishments, comment on cancer news, provide legislative updates, showcase ACS CAN events, and recognize ACS CAN volunteers.
ACS CAN LEADERSHIP SUMMIT AND LOBBY DAY
More than 500 ACS CAN volunteers and staff from all 50 states and nearly every Congressional district gathered in Washington, D.C. from September 25-28 for the fifth annual ACS CAN Leadership Summit and Lobby Day. Over the course of the event, the top two leadership tiers of ACS CAN's national volunteer organization -- state lead ambassadors (SLAs) and ambassador constituent team (ACT) leads -- and their staff partners met with members of Congress and benefited by skills training, issue briefings, and networking opportunities. Participants heard from ACS CAN Board Chair Gary Reedy, American Cancer Society Chief Medical Officer Otis Brawley, MD, Deputy White House Chief of Staff Nancy-Ann DeParle, ACS funded, University of Virginia cancer researcher Kevin Janes, PhD, and Pat Spain, star of the National Geographic Channel's "Beast Hunter" and a cancer survivor. Read the ACS CAN press release .
The actual day on the Hill to lobby Congress was Tuesday, September 27. ACS CAN advocates participated in 442 meetings where they urged their representatives and senators to fund proven cancer control programs and research to help develop better early detection tools and treatments particularly for those cancers that remain most lethal. Over the next few months, Congress faces the difficult task of trying to balance the federal budget and our advocates for cancer patients and survivors were carrying the message to ensure that the fight against cancer remains a national priority. And I am delighted to tell you our voices were heard, with the House Appropriations Committee including an additional $1 billion in funding for the National Institute of Health in its proposed health funding bill.
Also on Lobby Day, volunteers conducted 14 live and four taped television interviews with local news stations across the country. Volunteers giving these interviews were passionate, articulate and united in their message to make cancer research funding a national priority. Watch Ellen Stephenson, a Florida ACT lead, on WJXT-Jacksonville and Pennsylvania SLA Adam Bachelor on WPMT-Harrisburg. Interviews were also conducted in advance of Lobby Day: watch Russ Gillard, an Arizona ACT lead on KSAZ-Phoenix and Ella Campbell, an ACT lead from Georgia, on Fox 31-Albany, GA.
Coaches vs. Cancer Rally
ACS CAN further amplified its presence with a Capitol Hill rally featuring four NCAA Division I men's college basketball coaches and Society and ACS CAN CEO John R. Seffrin, PhD, called on Congress to support sustained cancer research funding. The event stressed that federal investment in cancer research, prevention and early detection is vitally important to cancer patients and survivors. Read coverage from Scripps Howard and Talk Radio News Service. .
The participating coaches -- Matt Brown from the University of Missouri-Kansas City, Jamie Dixon from the University of Pittsburgh, and Matt Doherty from Southern Methodist University -- are members of Coaches vs. Cancer®, a nationwide collaboration between the Society and the National Association of Basketball Coaches that empowers coaches, their teams and communities to join the fight against cancer. The fight is very personal for each of them. In fact, Coach Brown's 12 year old daughter Ally, a thyroid cancer survivor, accompanied him to the rally.
Milestones on the Mall and Lights of Hope
Building on the momentum of last week's events, on Lobby Day ACS CAN hung huge banners in front of the Capitol reflecting pool featuring milestones cancer survivors have marked thanks to cancer research. That evening, the reflecting pool was the site of a moving Lights of Hope ceremony, where Lobby Day participants and others gathered to reflect as 3,000 candles were lit to remember those who have died of cancer and honor those who survived.
Top Advocacy Honors Presented
Before concluding the week's events, ACS CAN recognized its National Distinguished Advocacy Award winners -- U.S. Representative John D. Dingell (D-MI), Utah State Senate President Michael Waddoups, and Hawaii State Senator Rosalyn "Roz" Baker. The National Distinguished Advocacy Award is ACS CAN's most prestigious advocacy honor and is awarded for leadership in the fight against cancer. Earlier in the week longtime Society volunteer and ACS CAN Board member Karen Moffitt was named the recipient of the ACS CAN Volunteer Award for Excellence in Advocacy. The award is the highest national honor for volunteer advocacy.
During the week of September 18, ACS CAN volunteers and staff across the country held more than 250 Celebrate With Action events to mark ACS CAN's 10th anniversary in all 50 states, look back at milestones ACS CAN has reached since it was created, and celebrate the personal milestones people have reached in their lives thanks to breakthroughs in cancer research. Volunteers delivered these personal milestones to Capitol Hill on September 27 as part of the annual ACS CAN Leadership Summit and Lobby Day. Read the ACS CAN press release.
The activities also proved a powerful means of mobilizing and motivating volunteers as well as communicating ACS CAN's message. Press coverage included an appearance by ACS CAN volunteers on NBC's "Today" show. Also read articles about local events in Alaska, Arkansas, Louisiana, Michigan, Mississippi, New Jersey, West Virginia and watch coverage from CTN-Hartford, KITV-Honolulu, KXNet-Bismarck, NECN-Worcester, MA, WAFB-Baton Rouge, and WISH-Indianapolis.
NIH Clinical Research Center Event
The South Atlantic Division and ACS CAN were proud to participate in a terrific Celebrate With Action event at the National Institutes of Health (NIH) Clinical Research Center, located on the NIH's main campus in Bethesda. Speakers included physician-scientists from the National Cancer Institute and ACS CAN as well as a cancer patient whose entire family has benefitted from an NCI clinical trial. A guided tour of the Clinical Research Center followed. FYI, the Clinical Research Center recently received the prestigious Lasker-Bloomberg Public Service Award. The award honors the Clinical Research Center's standing as a model research hospital and its rich history of medical discovery since opening in 1953.
CANCER RESEARCH AND PREVENTION PROGRAMS
Super Committee
Since Congress returned from its August recess, all eyes have been on the Joint Select Committee on Deficit Reduction, better known as the "super committee," which began meeting officially on September 8 and convened its first hearing on September 13. Because of the broad scope and authority of this committee, it will be critical to ACS CAN's work between now and the end of this year. The 12 lawmakers selected to serve on this committee have been charged with identifying $1.2 trillion in cuts over the next ten years in order to reduce the federal deficit. The committee can recommend any deficit-reduction measures it wants, be they cuts to health care access programs and cancer research and prevention, or tax increases of any kinds. While they may face political restraints, there are absolutely no legal restraints on their scope of work whatsoever. In the meantime, the government began the 2012 fiscal year (FY 2012) on October 1 operating under a stop-gap spending measure as the Appropriations process is on hold.
ACS CAN communicated with lawmakers throughout the August recess to voice concerns about funding for priority programs, and on September 13, ACS CAN sent a letter to the committee chairs (and shared a copy with every member of Congress) letting them know that as they identify the nation's budget priorities, there should be no greater priority than the fight against cancer.
ACS CAN is also developing a campaign strategy aimed not only at the Joint Select Committee members but all of the lawmakers of the committees which have jurisdiction over issues of importance to cancer patients and that will have input into this process. In addition, all of Congress will be required to vote on the final recommendations of the Joint Select Committee before December 23, 2011, and will need to hear from ACS CAN volunteers about ACS CAN's priorities before those votes occur. The strategy will include volunteer activity, on-line communications, lobbying, targeted patch-through phone calls, and potentially paid advertising. We will keep you apprised of the plans as they develop.
Health Funding Bills
On September 21, the Senate Appropriations Committee completed its work on its 2012 fiscal year (FY 2012) Labor-Health and Human Services (HHS) appropriations bill. Unfortunately, the bill cuts the National Institutes of Health (NIH) budget by $190 million (0.6 percent), bringing it down to $30.498 billion. The National Cancer Institute (NCI) budget is $5.001 billion under the bill, a cut of $58 million (1.2 percent).
Although details are not yet available, ACS CAN was informed that the Centers for Disease Control and Prevention's (CDC) programs will be held flat at 2011 fiscal year (FY 2011) levels. On a positive note, the Senate bill does not include any language that would consolidate CDC chronic disease programs. Prevention and Public Health Fund highlights include $100 million for tobacco cessation and $280 million for Community Transformation Grants.
On a brighter note, the House Appropriations Committee released a draft FY 2012 health spending bill that contains a $1 billion increase for cancer research, in large part this thanks to the work of ACS CAN advocates. Unfortunately, this good news is tempered by the inclusion of $52 million in cuts to CDC programs. Read the ACS CAN press releases on the Senate bill and House draft.
Read the section on the Affordable Care Act to learn how the committee's vote impacts health care reform.
MEDICAID
ACS CAN joined the American Diabetes Association, the American Lung Association, and Families USA to release state-specific reports revealing that millions of individuals in the nation's four largest states could lose access to their doctors, medications and treatments, and needed hospital care if cuts in the Medicaid program become a reality. The reports outline the number of children, adults and seniors in California, Illinois, New York and Texas who rely on Medicaid for the treatment of cancer, diabetes, chronic lung disease, heart attack, and stroke. The reports also highlight the impact potential cuts will have on these individuals and underscore the need to oppose changes to the program that will impact access to care for patients who need it most. Reports on additional states will be released over the next few weeks.
White House Breast Cancer Panel
Each week the White House identifies "Champions of Change," citizens who are making an impact on their communities and helping the nation address overcome serious challenges. During the week of September 26, the White House named five ACS CAN volunteers as Champions of Change for their leadership in the fight against breast cancer. The volunteers -- Peggy Belanger of Old Orchard Beach, ME; Anne Creech of Holland, OH; Thelma Jones of Washington, DC; Delia Oliveri of Las Vegas, NV; and Ellen Stephenson of Casselberry, FL -- were chosen for their work as ACS CAN advocates on behalf of breast cancer survivors, caregivers and providers.
On September 27, the women joined advocates from Susan G. Komen for the Cure, the National Breast Cancer Coalition, administration officials, and Tina Tchen, Chief of Staff to the First Lady, before an audience for a panel discussion on breast cancer, which was broadcast live. Watch the replay. In addition, each woman will have a blog post on whitehouse.gov/champions describing her advocacy work and how she is making positive changes in the fight against breast cancer throughout Breast Cancer Awareness Month.
National Breast and Cervical Cancer Early Detection Program
Yesterday, HHS Secretary Kathleen Sebelius joined ACS CAN, Tanya Snyder, breast cancer survivor and wife of Washington Redskins owner Dan Snyder, and other breast cancer survivors to mark National Breast Cancer Awareness Month and recognize the successful National Breast and Cervical Early Detection Program (NBCCEDP). The NBCCEDP has given low-income, uninsured and underinsured women access to lifesaving breast and cervical cancer screenings since 1991 and will perform its historic 10 millionth screening this fall. The event was held at the Capital Breast Care Center, an initiative of the Georgetown Lombardi Comprehensive Cancer Center that provides comprehensive, culturally appropriate breast cancer screening services and health education to women in the Washington, DC area regardless of their ability to pay. Read the ACS CAN press release.
Patients' Bill of Rights Anniversary
September 23 marked the first anniversary of the date strong consumer protection provisions in the Affordable Care Act took effect. Collectively known as the "Patients' Bill of Rights," these measures will meaningfully improve the health care system for people with cancer and their families, and include:
- Prohibiting insurance companies from placing lifetime dollar limits on coverage;
- Tightly restricting annual coverage limits, which will be phased out completely by 2014;
- Guaranteeing coverage in new plans of proven preventive services such as mammograms, Pap tests and colonoscopies, and ensuring that these services are free to patients;
- Barring insurance companies from denying coverage to children up to age 19 with pre-existing conditions;
- Enabling dependent children to remain on their parent's insurance policy up to age 26; and,
- Banning health plans from abruptly dropping people from coverage when they become sick.
Litigation
September was an eventful month for litigation related to the Affordable Care Act. Last week, the Justice Department elected not to ask the full 11th Circuit Court of appeals to overrule the decision of the circuit's three-judge panel to rule against the law, opting instead to take the case directly to the Supreme Court. This action virtually guarantees that the high court will hear the case in its current term, which began yesterday, with a decision expected by early summer. The high court will likely consolidate the case with other challenges now working their way through the appeals process.
On September 8 the Fourth Circuit Court of Appeals dismissed two challenges to the Affordable Care Act. In Commonwealth of Virginia v. Sebelius, the case brought by Virginia's attorney general, the three-judge panel ruled that the state had no standing to bring the suit because the individual mandate imposes no obligations on the state. In a separate case brought by Liberty University, the court ruled that the lawsuit was premature, maintaining that the court did not have jurisdiction because the law has not yet taken effect. In each of these cases, because the court dismissed the suits on jurisdictional grounds, it did not discuss the constitutionality of the Act. With the Fourth Circuit ruling, a total of three federal appeals courts have ruled out of more than thirty lawsuits filed across the nation challenging the Affordable Care Act.
In other developments, the DC Circuit Court of Appeals heard arguments on September 23 in a case against the Affordable Care Act brought by the American Center for Law and Justice. The Eighth Circuit Court of Appeals scheduled oral arguments for the week of October 17 in a case brought by Missouri Lieutenant Governor Peter Kinder. Kinder is seeking the overturn of a district court judge's decision earlier this year to dismiss the case. Finally, a lower federal court judge in Pennsylvania ruled that the Affordable Care Act's requirement that individuals purchase insurance -- the so called "individual mandate" -- is unconstitutional.
In Congress
Health Funding Bills
Four Affordable Care Act related amendments were offered to the Senate Appropriations Committee bill allocating funds for the 2012 fiscal year (FY 2012). The first, and most significant, would have suspended implementation of the law, prohibited the use of appropriated funds for purposes related to the law, prohibited the hiring of staff for programs authorized in the law, and restricted Center for Medicare and Medicaid Services (CMS) activities. The amendment was defeated on a party line vote.
The second amendment would have required a CMS actuarial analysis on the impact of the essential benefits package on insurance premiums and failed by a vote of 15 to 15. The third amendment would have required a CMS actuarial analysis of the impact of state Medicaid costs on state budgets. This amendment also failed by a vote of 15 to 15. The final amendment would have taken $500 million from the Affordable Care Act-created Prevention and Public Health Fund, which ACS CAN strongly and actively supports, to pay for an increase in a home energy assistance program. The amendment failed by a vote of seven to 23.
On the House side, the Appropriations Committee released a draft health spending bill for FY 2012 that proposes eliminates funding for implementation of the Affordable Care Act and rescinds $1 billion from the Prevention and Public Health Fund.
Over the past year there have been multiple attempts to impede the Affordable Care Act through the appropriations process and the most recent efforts are not likely to be the last. ACS CAN will continue to engage in the FY 2012 appropriations process and make sure members of Congress are aware that ACS CAN supports full implementation of the law as well as priority programs in the law, such as the Prevention and Public Health Fund. Read the ACS CAN press releases on the Senate bill and House draft.
Hearing on Repealing Grandfathered Plans and Medical Loss Ratio Provisions
The House Energy and Commerce Committee Health Subcommittee held a hearing on September 15 on draft legislation to roll back consumer protections for plans designated as "grandfathered" -- individual health insurance plans and employer-based health insurance plans already in existence when the Affordable Care Act was signed into law on March 23, 2010. The legislation would exempt "grandfathered plans" from important insurance reforms included in the Affordable Care Act (ACA) no matter how much the plan cuts benefits or increases premiums over time - theoretically providing them "grandfathered status" indefinitely. Consumer protections that would not apply to these plans include prohibitions on rescinding insurance after a policy holder becomes ill, lifetime and annual caps, pre-existing condition restrictions, and cost sharing for preventive services.
Legislation already introduced that would repeal the medical loss ratio (MLR) provision included in the Affordable Care Act was also discussed. The MLR provision requires insurers in the individual and small group markets to spend 80 percent of premiums on medical care and quality improvement activities, and requires larger plans to spend 85 percent of premiums.
ACS CAN opposes both legislative proposals because they would eliminate some of the most important consumer protections that ACS CAN advocated for in health care reform. ACS CAN joined other consumer groups in signing a letter to the Subcommittee's chair and ranking member expressing our concerns.
State Update
Rhode Island Exchange
Rhode Island Governor Lincoln Chafee issued an executive order establishing a state health insurance exchange earlier this week. He also named individuals to serve on the exchange's inaugural Executive Board of Directors/Governance Board. To date, 21 states have passed various forms of legislation or had executive orders issued establishing a state exchange.
Federal-State "Partnerships" and Health Exchanges
As you know, the Department of Health and Human Services (HHS) released a proposed rule to govern the new health care exchanges in July. Within that proposal, HHS referred to the possibility of forming federal-state partnerships, positing that the federal government might run an exchange in a state but allow the state itself to perform some of the exchange's core functions. ACS CAN and other consumer groups have expressed strong reservations about this approach because of concerns that dividing core functions might undermine the "one-stop shopping" concept for consumer service within the Affordable Care Act.
HHS recently met with state officials and consumer groups to provide more information on the partnership model. The agency suggested it might partner with states to perform consumer assistance functions, such as the navigator program or web portals, and/or "plan management," which would include health plan selection and exchange oversight. ACS CAN and other consumer groups are supportive of allowing states to assume consumer assistance functions provided there is appropriate federal oversight, but strong reservations remain as to allowing states to engage in health plan management. The responsibilities that are inherent in health plan management are integral to other core functions of an exchange such as eligibility for assistance, adverse selection, and plan performance. ACS CAN has expressed its concerns orally and will submit additional written comments. We will provide more information as it becomes available.
HHS Listening Tour
American Cancer Society Division and ACS CAN staff in several states have attended or will attend regional HHS "listening tour" sessions being convened throughout the country to gauge public reaction to proposed regulations governing state health insurance exchanges. Five stops are planned, The first two were held in New York City on September 21 and Chicago on September 26. The meetings are by invitation only, and while no formal presentations or testimony are allowed, ACS CAN prepared talking points for field staff who attend that focus on four main topics:
1) The governance board make-up of state exchanges and possible safeguards to help prevent consumers and patients from being in the minority as compared to representatives of the insurance industry.
2) The new "partnership" concept that HHS has recently proposed to run exchanges as a team with federal and state elements combining to run a state exchange in those states where they are not prepared to operate their own.
3) The details of how the federal exchange is going to look and how it will be structured.
4) The process for resolving disputes over eligibility between Medicaid and the exchange.
Grants
HHS announced grants totaling more than $225 million, much of it from the Prevention and Public Health Fund, to improve public health infrastructure and invest in community-based prevention programs. Awarded in nearly every state, funding will enhance state, tribal, local and territorial efforts to provide services such as tobacco cessation and increasing the public health workforce to deliver preventive care to more communities. Specifically, $40 million was allocated toward initiatives to bolster the public health workforce, $49 million will go toward state and local health departments, and $137 million will go toward prevention and public health programs.
Other HHS grants announced in September include the release of $700 million in Affordable Care Act funding to build, expand and improve community health centers and $108 million in Community Transformation Grants to 61 states and communities. These grants were created under the Affordable Care Act to address underlying causes for chronic diseases, such as smoking, poor diet, and lack of physical activity.
Rate Reviews
On September 1, a provision in the Affordable Care Act that allows for greater state, federal, and public scrutiny of premium hikes took effect. Insurers must now justify any premium hikes of 10 percent or more by providing information on where the money is going, including a breakdown of medical services, profits, and administrative expenses. The new rule helps ensure that consumers receive value for their premium dollars and that significant premium increases in all states are justified and transparent. HHS will conduct reviews in many states, because only a handful of states have such authority. Also worth noting, the Administration issued a clarification saying that trade group and other association health plans will be subject to the same scrutiny.
Rise in Uninsured
The number of Americans without health insurance rose from 49 million to 49.9 million in 2010, according to a Census Bureau report released September 13. Due to population growth, the percentage of uninsured - 16.3 percent - is not statistically different from 2009. The report also found that the poverty rate rose to 15.1 percent in 2010, up from 14.3 in 2009, causing many Americans to switch from employer-sponsored to government-sponsored health care.
Coverage for Young Adults
One million young adults gained health insurance in 2011 because of Affordable Care Act implementation according to a National Center for Health Statistics report. The percentage of young adults ages 19 to 25 who have health insurance coverage increased to 69.6 percent, up from 66.1 percent in 2010. The results show that the dependent coverage provision of the law is having a significant impact on improving access to health care for young adults.
Reducing High Rates of Underinsured
The number of underinsured adults rose 80 percent, from 16 million to 29 million, between 2003 and 2010, according to a new Commonwealth Fund study released today. The study also found that the underinsured were twice as likely, and the uninsured were three times as likely, to forgo care than those with adequate insurance. Once fully implemented, provisions in the Affordable Care Act could reduce the rate of underinsured by 70 percent by providing premium assistance and lowering out-of-pocket costs. The extent to which it will help will depend on the choice of plans, benefit design and health care cost trends.
HealthCare and You Online Chat
ACS CAN Vice President for Federal Relations and External Alliances Dick Woodruff participated in a web chat on how the Affordable Care Act is putting an end to annual and lifetime dollar limits on health coverage, part of a series from the Health care and You coalition. You may recall that ACS CAN and other national health groups representing patients, seniors, doctors, nurses, hospitals, and pharmacists launched the group earlier this year to educate th