February 2013 Monthly Advocacy Update

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CANCER RESEARCH, PREVENTION & EARLY DETECTION

 

Sequestration

Across-the-board budget cuts to domestic and defense discretionary spending agreed upon in the 2011 Budget Control Act, also known as sequestration, took effect on Friday, March 1. Exactly how the cuts will affect us remains unknown, but what is known is that funding for cancer research and prevention programs is taking a dangerous hit. Read the ACS CAN press release and my Cancer CANdor blog post.

 

Sequestration cuts the National Institutes of Health (NIH) budget by $1.6 billion, or 5.1 percent. This brings the agency's spending level back to that of the 2008 fiscal year, but with even less purchasing power when accounting for the increased cost of medical research. Sequestration could lead to 1,380 fewer research grants being funded in the current fiscal year and could lead to 20,500 fewer jobs. Every dollar invested in cancer research yields more than two dollars in economic activity for communities across the country; therefore these funding reductions are tantamount to a $3 billion decrease in economic activity nationally.

 

Sequestration will also undermine the nation's ability to apply what is already working in cancer detection and prevention. Cuts to the CDC budget will mean 32,000 fewer breast and cervical cancer screenings will be available through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). Without the program, low income women have no other option for affordable, lifesaving screenings.  Access to affordable colon cancer screenings for both men and women would be hampered as well. Critical tobacco control efforts, including tobacco Quitlines, community obesity prevention programs and other cancer-fighting efforts will feel the effects too. 

 

ACS CAN volunteers continue to engage their Members of Congress in a variety of ways, urging lawmakers to quickly find a way to restore funding for cancer research. Volunteers visited district offices over the President's Day recess to urge their lawmakers to protect funding for cancer research and prevention programs. More than 1,000 volunteers from every state across the country have shared their personal stories of why research is critical to their family and friends on ACS CAN's website, each one communicating the urgent need for lawmakers not to cut funding for cancer research. ACS CAN is also running advertising in Capitol Hill publications, illustrating the potential to leave critical breakthroughs to languish in the labs if funding for important cancer research is not restored swiftly.

 

Research Report

As the largest funder of cancer research, the federal government has enabled significant strides in the development of cancer screening tests and therapies that are responsible in part for the overall cancer death rate declining by 20 percent in the U.S. from its peak in 1991 through 2009 - saving 400 lives a day that were previously being lost to cancer. Last month, ACS CAN issued a report, "Catalyst for Cures: How Federally Funded Cancer Research Saves Lives," highlighting progress in the fight against specific cancers, including breast cancer, melanoma and lung cancer. While recent discoveries have made some cancers easier to treat and survive, and led to treatments that attack only cancer cells, rather than attacking a patient's healthy cells as well, there are many cancers where researchers are still searching for answers.   

 

To promote the report, ACS CAN hosted a briefing on Capitol Hill featuring Representative Ed Markey; ACS CAN Board Member Sandi Cassese; Dr. Helen Sabzevari, Global Head of Oncology-Immunotherapy, EMD Serono Inc.; Dr. Andres Forero, Professor, University of Alabama at Birmingham Comprehensive; and Lisa Bender, a cancer survivor from Minneapolis, Minnesota.

 

ACS CAN also worked with Representative Brian Higgins and the Roswell Park Cancer Institute in Buffalo on an event calling attention to the report and the impact research cuts are having on their local community. As a long time champion for cancer research funding, Representative Higgins plans to use the report to further the fight to make funding the fight against cancer a top priority in Congress during budget negotiations. Read the Buffalo News story and watch YNN's coverage.

 

Voices of Research

More than 1100 ACS CAN volunteers responded to our call for their personal accounts of why cancer research is so important. Many of the stories were recorded and are available with accompanying photos at fightcancer.org/voice.  

OVAC Lobby Day

ACS CAN and its partners in One Voice Against Cancer (OVAC) coalition held a lobby day on February 13 to urge lawmakers to refrain from making further spending cuts to federal programs that are helping to fight cancer. To maximize outreach members of the Coalition for Health Funding, the National Coalition for Cancer Research, and United for Medical Research joined OVAC on Capitol Hill. The lobby day helped to keep the need for sustained investments in cancer programs top of mind amid the debate over spending and deficit reduction. 

 

 

ACCESS TO CARE - AFFORDABLE CARE ACT

 

Major Regulations Finalized

The administration released two final major Affordable Care Act (ACA) regulations:  the essential health benefits (EHB) and the insurance market reforms. Both final rules are similar to the proposed rules issued late last year. 

 

The biggest concern with the EHB proposed rule was the prescription drug coverage, which we believed might prove inadequate for cancer patients under some of the benchmark plans. The final rule has some improvements. (1) It more clearly states that new drugs can be added at any time; and (2) if a "medically appropriate" drug is not on a plan's formulary, a patient has the right to request coverage under the EHB (which means the patient cost is subject to the ACA out-of-pocket limits).  On both of these issues, and others in the EHB, we will be advocating for clearer guidance from the administration to ensure full access to necessary and appropriate coverage. 

 

The biggest issue in the insurance market rule is the application of the smoking surcharge in the individual and small group market. The surcharge can be as high as 50 percent of the insurance premium for tobacco users. In our comments to the proposal we raised concerns about the:

• Definition of "user"
• "Look back" period for use
• Range of products that would be covered
• Frequency of use; and
• Clarity of explanations and questions on application forms to minimize misunderstandings by applicants.

The final rule addresses some of the concerns we raised, but we believe there is still potential for considerable misunderstanding and problems the way the rule is written. ACS CAN and other groups have already scheduled a meeting with the Department of Health and Human Services (HHS) to push for further clarifications and improvements. We remain very concerned that many tobacco users who need access to health care may be priced out of the market because the surcharge could be so significant. Read the ACS CAN press release.

Preventive Care Coverage

In conjunction with the final essential health benefits rule, the Department of Health and Human Services (HHS) and Department of Labor issued an FAQ which clarified the coverage of some cancer preventive services. The FAQ clarifies that if a polyp is found during a screening colonoscopy, insurers may not impose a co-pay on that service. This was an issue that the American Cancer Society, ACS CAN and the Kaiser Family Foundation highlighted in a report concerning the inconsistent implementation of this provision of the Affordable Care Act (ACA). ACS CAN worked hard to ensure this clarification was made.  In addition, the FAQ further clarified that if a patient has a prescription for an over the counter tobacco cessation product,

 then the issuer must cover that product at no cost to the patient. Finally, HHS and DOL state that the preventive services regarding genetic counseling and evaluation for the routine breast cancer susceptibility gene (BRCA) include both the counseling and the genetic testing. Read the ACS CAN press release.

 

Increasing Access to Medicaid

ACS CAN released a public opinion poll that shows registered voters in key states want their state to accept federal funds available to broaden access to health care coverage through Medicaid.  The polls, conducted by a bipartisan pair of firms, surveyed people in seven states that have been wrestling with the decision of whether to make health coverage under Medicaid available to individuals and families up to 133 percent of federal poverty level as urged by the Affordable Care Act. (The provision is voluntary due to last year's Supreme Court ruling.) The federal funds have already been authorized and it makes good health and economic sense to provide more people with access to lifesaving cancer prevention, early detection and treatment options through Medicaid.  Read the Cancer CANdor blog post on the poll.

 

Society research has shown that health outcomes for cancer are hugely dependent upon insurance coverage and access to care. For this reason, ACS CAN is urging state leaders to "opt in" and the poll is part of our ongoing work, which is already making a difference. New Mexico's governor included the Medicaid funding in the state budget following an ACS CAN campaign that included grassroots action, media advocacy, and direct lobbying. In Michigan, the governor said the state would opt in after more than 600 volunteers responded to ACS CAN's call to action to urge the state to accept the federal funds, the largest response in Michigan to an advocacy action alert since the 2009 smoke-free campaign. To date, governors in 23 states and the District of Columbia have indicated they will move forward.

 

Numerous media outlets and state political blogs have cited the polling results and multiple letters to the editor and op-eds by ACS CAN volunteers have been published. In addition, ACS CAN briefed its corporate partners and more than 25 health and consumer advocacy groups on the poll and as well as a study on how to talk about the benefits of increased access to Medicaid more effectively. Summaries of the media coverage and messaging are attached.
Medicaid Polling clips 2013.xlsx  ACS CAN Medicaid Poll Summary Final.pdf 

 

Tax Credits

The U.S. Treasury Department issued a final regulation on eligibility for tax credits in the health insurance exchanges that includes a provision that may adversely affect families with employer-provided health insurance. Under the Affordable Care Act , if a person has to pay more than 9.5 percent of their income for employer provided health insurance, they may drop the employer's coverage and receive federal subsidies to help pay for a plan in the state exchange. The final rule measures "affordability" based on the cost of coverage for the worker, rather than the cost for the entire family. So if coverage in an employer plan costs a worker 9 percent of his or her wages and the cost to the family coverage is 13 percent of wages, neither the worker nor the worker's dependents are eligible for subsidies. ACS CAN and many other consumer groups strongly opposed this policy when it was first proposed, but the administration did not change the final rule, saying its final position is based on its interpretation of the law's statutory language.

 

Network Adequacy for Health Insurance Plans

Health plans are increasingly relying on provider networks as a tool for improving market share and controlling costs, leading to higher cost-sharing for participants who out-of-network, sometimes as high as 50 percent. Moreover, the networks can change frequently as providers are added or dropped. The Affordable Care Act requires health plans in the exchanges to have "adequate networks," but the final regulations issued by HHS largely leave it to the exchanges and states to determine what is adequate, in large part because state needs and resources vary considerably.

 

The issue is important to cancer patients who may have to go out-of-network to get the best treatment. Unfortunately, consumers who go out of network currently have few protections or rights. Thus, ACS CAN will advocate for strong networks and consumer protections as states and exchanges grapple with developing standards.

 

Wellness

ACS CAN submitted comments on a proposed regulation regarding wellness programs. The proposal would update a regulation issued in 2006, pursuant to changes in the Affordable Care Act. Promoting and maintaining healthy behaviors are important in the fight against cancer, and worksite wellness programs can contribute positively if structured properly. ACS CAN is a strong supporter of comprehensive employee wellness programs, but is concerned that rewards and penalties in such programs could inadvertently be a means of discriminating based on health status. At this time there is insufficient research demonstrating the efficacy of using financial incentives to instill long-term behavioral changes.

 

ACS CAN's comments encouraged HHS and the Department of Labor to require employers to design wellness programs so that all participants receive the support necessary to achieve improved health. The comments cite the tobacco surcharge as an example and urge the Administration to prohibit programs from imposing higher costs on tobacco users unless full and complete access to robust cessation programs are also provided. ACS CAN also raised concerns about incentives or penalties that could price some individuals out of coverage if they fail to meet program goals. Finally, ACS CAN strongly recommended that the affordability provisions of the Affordable Care Act supersede wellness plan design at all times.

 

Tobacco Surcharge

Under the Affordable Care Act, insurers can add as much as a 50 percent surcharge on smokers' health insurance premiums in the individual and small group market. However, the law also gives states the flexibility to reduce or ban the tobacco surcharge. ACS CAN is encouraging states to restrict the use of this surcharge. Higher premiums are not proven to reduce smoking and, in fact, may result in reduced access to health care for those who need it most. A large percentage of smokers in these markets could find health insurance unaffordable as a result of the surcharge (also, if a person is eligible for subsidies in the exchange, the subsidy does not apply to the surcharge--i.e., they have to pay the surcharge entirely out-of-pocket). States will see greater public health and economic benefits through increased tobacco excise taxes, implementation of strong smoke-free laws, and funding prevention and cessation programs in their state than by raising insurance rates on tobacco users. Applying the tobacco surcharge goes directly against the purpose of the ACA - to provide access to quality, afford able health insurance to more people, especially those with serious health problems. 

Exchanges

February 15 was the deadline for states that will not be running their own health insurance exchange to tell HHS whether they want to run a "partnership" exchange in cooperation with the federal government. Arkansas, Delaware, Illinois, Iowa, Michigan, and New Hampshire have indicated they wish to run a partnership exchange. ACS CAN will continue to work with HHS and other consumer groups to understand how operational decisions will be made for each state. Last Friday was the deadline for states to inform HHS if they were planning to operate a partnership exchange with the federal agency.

 

In Idaho, Minnesota, and New Mexico, patient advocates and state officials are working furiously to pass legislation that will enable them to join the 19 states and District of Columbia that have been given preliminary approval by HHS to run their own exchange. ACS CAN is a major contributor in efforts to establish an exchange in those states. A bipartisan majority of Americans support creation of the state health insurance exchanges according to a new poll from the Kaiser Family Foundation, Robert Wood Johnson Foundation, and Harvard School of Public Health.

 

Public Outreach and Enrollment

Health insurance exchanges created by the Affordable Care Act have been described as "online marketplaces" like Travelocity, where people will be able to shop for health plans like they do for plane tickets. But a consumer focus group in Colorado suggests that people are going to need something more like TurboTax. Like taxes, buying insurance can be complicated and rife with confusing jargon. And the decisions consumers make are high stakes. The wrong choice can cost a consumer big money and dramatically impact the coverage they receive.

 

ACS CAN recognizes that some consumers will find enrollment challenging, especially if they have not purchased insurance in the past. We are working with Enroll America, a nonprofit that is leading a major campaign to educate uninsured Americans about the law and help them select a health plan as the exchanges go live. Read a Washington Post  piece calling attention to the need for patient navigators to guide consumers through the process.

 

Implementing Changes to Medicaid  

A draft regulation HHS issued on January 22 streamlines many Medicaid eligibility and appeals issues and lays out the process for determining the program's essential health benefits (EHB) package. The process is similar, but not identical, to how EHB are defined in private plans, and states will have flexibility in finding ways to hold down costs. The rule also makes some changes to cost-sharing in Medicaid, but it is difficult to determine the impact on patients until additional regulations are issued. ACS CAN is reviewing the proposal and will likely comment on it with other consumer groups.

 

In a related development, a 50-state survey released by the Kaiser Commission on Medicaid and the Uninsured finds that nearly all states are making changes to develop faster, streamlined Medicaid enrollment systems as required under the Affordable Care Act regardless of whether they intend to increase access to Medicaid coverage.

 

Medicaid, CHIP and State Based Health Exchange Coordination  

ACS CAN is reviewing a proposed regulation that lays out a structure and options for coordinating Medicaid and the Children's Health Insurance Plan (CHIP) with the new exchange marketplaces. To provide a seamless experience for the consumer, ACS CAN believes the programs should have consistent standards and systems to meet consumers' health care needs, improve quality, and lower costs.

 

No Co-pays for Prevention in Medicaid

The Centers on Medicare and Medicaid Services (CMS) provided guidance to state Medicaid directors on the 1 percent increase in federal matching funds for coverage of preventive services with no co-pay. CMS said the increase applies to services given an A or B rating by the U.S. Preventive Services Task Force, and to recommended adult vaccines. States will receive the increase for services provided through fee-for-service or managed care basis, or through alternative benefit plans, which are the Medicaid health plans being offered to newly eligible beneficiaries. Such plans are required to offer coverage for preventive care.

 

Rate Increases

Requests for double-digit health insurance rate increases have plummeted over the past four years, according to report from the Administration. Researchers analyzed data available from a geographically-diverse sampling of 15 states that publicly post all requests in the individual market. They found that 74 percent of all requests were above 10 percent in 2009, but that number decreased to 35 percent in 2012. Preliminary data for 2013 shows 14 percent of rate increases requesting a double-digit growth.

Administration officials trust that this shift is influenced by the health law's rate review program, which requires all rate hikes above 10 percent to undergo additional regulatory scrutiny. Since September 2011, each of the rates is reviewed by a state or federal regulator and is determined "reasonable" or "unreasonable." ACS CAN supported the Rate Review and Medical Loss Ratio provisions of the Affordable Care Act, which are helping to lower these rates.

 

State Innovation Awards

Twenty-five states received State Innovation Model Awards from HHS recently to work on innovations and reforms to improve the quality and reduce the cost of health care. Of the 25, six (Arkansas, Maine, Massachusetts, Minnesota, Oregon and Vermont) received "model testing awards" to implement plans to transform health care delivery, specifically to test multi-payer payment and service delivery models on a broader scale within their state according to HHS. The 19 other states (California, Connecticut, Colorado, Delaware, Hawaii, Idaho, Illinois, Iowa, Maryland Michigan, New Hampshire, New York, Ohio, Pennsylvania, Rhode Island, Tennessee, Texas, Utah and Washington) will use the funds to develop their state health care innovation plans. A total of $300 million will be given to the 25 states.

Fewer Young Adults  Lack Health Insurance

According to a recent Gallup poll, 22.7 percent of Americans aged 18 to 25 reported having no health insurance in the fourth quarter of 2012, down from 24.5 percent in the first quarter and the lowest since Gallup and Healthways started tracking coverage rates in January 2008. Uninsured rates for older age groups, however, held fairly steady last year.  The percentage of uninsured young adults has steadily declined since late 2010, when the health law provision allowing Americans to stay on their parents' plans up to age 26 went into effect. No other demographic or socioeconomic group appears to be experiencing significant changes yet.

 

 

ACCESS TO CARE - OTHER

 

Pain Medication

The Food and Drug Administration (FDA) Drug Safety and Risk Management Advisory Committee met recently to consider changes to how hydrocodone-combination medications are classified. Specifically, FDA is looking at whether these drugs should be moved from Schedule III classification to the more restrictive Schedule II. Products containing hydrocodone are used often and effectively to address the acute and exacerbating pain many cancer patients experience.

 

The American Cancer Society provided testimony to the committee to inform them of the impact such a change would have on cancer patients. Current evidence does not show that reclassifying medication containing hydrocodone will measurably address abuse of these products. The record does, however, indicate that moving these drugs to Schedule II would interfere substantially with patient access to quality pain care and result in needless suffering. Prescriptions for Schedule II medications cannot be transmitted by telephone or fax, nor can they be refilled. The proposed policy change would require patients to visit their doctor more frequently simply to refill a prescription, and may prove to be extremely costly to patients and the health care system.

 

The Committee voted 19-10 in favor of rescheduling hydrocodone combination medications. The FDA is now required to accept or reject the committee's recommendation through the formal regulatory process. The Society and ACS CAN's work on the issue is ongoing.

 

COLON CANCER

ACS CAN welcomed resolutions introduced in Congress designating March as National Colorectal Cancer Awareness Month, which will raise awareness of colon cancer screening. The action comes just weeks before sequestration is set to take effect and ACS CAN used the opportunity to call on lawmakers to work together to protect federal funding for screening programs and research from the threat of these drastic cuts. If sequestration goes into effect, it would sharply reduce federal funding for colorectal cancer screening programs that serve uninsured and underinsured patients through the Centers for Disease Control and Prevention (CDC), as well as for other proven early detection and prevention programs and research projects.

TOBACCO CONTROL

 

Thanks in large part to evidence-based tobacco control public policies, the percentage of adults who smoke cigarettes has declined over the past decade while also prompting current smokers to cut back. In its annual state tobacco control report, the CDC predicted that if current trends continue the nation will fail to meet its Healthy People 2020 objective to reduce cigarette smoking prevalence to 12 percent from today's 19.3 percent. Approximately one in five adults smoke  cigarettes and large disparities exist in smoking rates based on race, ethnicity, and income and education levels. The report underscores the urgency of ACS CAN's work to enact policies that reduce tobacco consumption and discourage children from smoking, including regulation of tobacco products, higher tobacco taxes, comprehensive smoke-free laws, and sustained state funding for evidence-based cessation and prevention programs. 

 

FAMILY SMOKING PREVENTION AND TOBACCO CONTROL ACT

Electronic Cigarettes

Awareness and use of electronic cigarettes, commonly referred to as e-cigarettes, significantly increased between 2010 and 2011, according to a new CDC survey. The number of adults who are aware of then went up by 44.8, percent, while the number of adults who use them rose by 88 percent. Use more than doubled among current smokers to 21.2 percent. The Food and Drug Administration (FDA), which has the authority to regulate tobacco products under the Family Smoking Prevention and Tobacco Control Act, has not asserted its jurisdiction over these products. E-cigarettes have not been scientifically shown to be effective tobacco cessation tools, yet some distributors are marketing them either directly or indirectly for that purpose. ACS CAN is calling upon the FDA to test these products to determine their potential as cessation aids so consumers have the best information available when deciding how to quit.

In addition, e-cigarettes are often manufactured to resemble traditional cigarettes, and are available in fruit and candy flavors that are appealing to youth. The familiar appearance and enticing flavors could actually encourage kids to try traditional cigarettes, rather than avoid them. The dramatic increase in both awareness and use of e-cigarettes adds even more urgency to the need for the FDA to regulate these products so it can determine what ingredients e-cigarettes contain, how they are being used and what effects they have on users.

Warning Labels for Smokeless Products

The FDA announced it is seeking comments on what changes to smokeless tobacco warning statements would promote greater public understanding of the risks associated with the use of smokeless tobacco products.  ACS CAN and its public health partners are drafting a joint response focused on the health risks smokeless tobacco products pose and the importance of warning labels that are effective in communicating that information.

 

TOBACCO TAXES

 

ACS CAN endorsed a Senate bill that would equalize federal tax rates on all tobacco products and close a loophole in the 2009 law that increased the federal tax on cigarettes by 61 cents. The law set the tax rate for small cigars and roll-your-own cigarettes at the same level as cigarettes, but taxes for large cigars, smokeless tobacco and pipe tobacco remained dramatically lower. As a result, roll-your-own cigarette and small cigar manufacturers adjusted their products just enough to qualify for the lower tax rates, making them more affordable to youth and leaving the full public health benefits of the tax increase unrealized. In addition, the federal government is losing an esti