The ABC's of Advocacy

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  • <number>
  • Region 9 includes as well as the Territories of American Samoa,Guam and the Commonwealth of the Northern Mariana Islands
  • (Uninsured #) according to the Current Population Survey released in 2005
    As premiums increase and employers reduce coverage and benefits, more Americans—even though employed—cannot afford to participate in their companies’ programs.
    Underinsured adults are nearly as likely to go without needed care or take on medical debt as the uninsured.
    The most recent government census reports show that only one state (Minnesota, at 8.5) had less than 10% of its population uninsured—Texas has the highest rate of uninsured– over 25% of its population.
  • MEDICAID WAIVERS: Section 1115 of the Social Security Act allowed states flexibility in administering Medicaid. The Health Insurance Flexibility and Accountability Demonstration Initiative (known as HIFA) issued by CMS in 2001 enhanced this flexibility considerably, including allowing new demonstrations that streamline benefit packaging, increase cost-sharing for optional and expanded Medicaid and SCHIP populations, allow public-private partnerships, and change eligibility and operational rules.
    What is new:
    Recent 1115 waivers proposed or approved include those for California, Florida, Iowa, Massachusetts, New Mexico, Oklahoma, Vermont. The recently renewed Massachusetts 1115 waiver called MassHealth, for example, originally approved in 1997, sought to maintain funding mechanisms the state was using to draw federal matching payments, but CMS used the renewal request to make several changes, including the establishment of a Safety Net Care Pool for reducing the number of the state’s uninsureds. This provision, along with other elements of the waiver, has become part of Massachusetts’ efforts to dramatically restructure its methods for financing care for the uninsured and reduce the numbers of the uninsured. Along with its newly legislation, this commitment has propelled Massachusetts into the forefront of fundamental policy debates about how the states can and should manage their uninsured populations. We’ll examine this new legislation in more detail in a few minutes (Diana’s Massachusetts slides)
    Massachusetts is not the only state taking the health care access challenge seriously. Many current state strategies try to build on existing employer-sponsored insurance market mechanisms to cover lower income groups, on existing public programs to cover higher income groups or added populations, or create new programs which link the public and private structures. Arkansas received a waiver in March 2006 allowing use of Medicaid funds to provide premium assistance to small business to help them provide health insurance to low-income workers. Several states, including Texas and North Carolina, are undertaking large studies and proposing major overhauls of their state’s approaches to public health and health care financing.
    Finally, the Deficit Reduction Act of 2005 is expected to reduce Medicaid spending over the next 5 years by $4.3 billion. It adds mechanisms for dramatically increased flexibility for states to amend Medicaid plans including not having to demonstrate savings or operate under budget neutrality requirements. States may therefore pursue new expansions but will need to identify funding to implement them without a federal match. Other provisions impacting states include new benefit design and cost-sharing flexibility in Medicaid program plans, allowing states to shift more cost onto Medicaid beneficiaries; allowing families of disabled children to buy into Medicaid if their income is less than 300% FPL (called the Family Opportunity Act); and provides for ten states to establish a “Health Opportunity Account” option, similar to HSAs, for Medicaid beneficiaries.
  • A valiant attempt to cover all uninsured
    Interesting Note: The Act was structured with CMS collaboration to assure availability of matching federal $385 under the most recently approved renewal of MassHealth (Medicaid) waiver, which:
    Expands benefits to children
    Establishes safety net care pool
    Enhances acute hospital reimbursement
    Enhances physician provider reimbursement
  • States always take the text and make minor modifications, but so far, none has taken this language much further away from these principles.
  • The ABC's of Advocacy

    1. 1. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Nancy Davenport-Ennis, CEONancy Davenport-Ennis, CEO National Patient Advocate FoundationNational Patient Advocate Foundation 725 15th St. NW725 15th St. NW 10th Floor10th Floor Washington, DC 20005Washington, DC 20005 1-202-347-80091-202-347-8009 South Carolina Cancer AllianceSouth Carolina Cancer Alliance && South Carolina Oncology SocietySouth Carolina Oncology Society Annual MeetingAnnual Meeting Friday, May 5, 2006Friday, May 5, 2006 Columbia, SCColumbia, SC The ABC’s ofThe ABC’s of AdvocacyAdvocacy
    2. 2. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Actions for Effective AdvocacyActions for Effective Advocacy Advocacy is a process of communicationAdvocacy is a process of communication different from the mere dissemination ofdifferent from the mere dissemination of information and education.information and education. It seeks support, commitment and recognitionIt seeks support, commitment and recognition from policy makers and the general public.from policy makers and the general public. It provides solutions and support on specificIt provides solutions and support on specific issues.issues. It relies on the collection of accurate information toIt relies on the collection of accurate information to inform activities.inform activities. National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    3. 3. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Advocacy BasicsAdvocacy Basics Creates Awareness of the Magnitude of the Problem.Creates Awareness of the Magnitude of the Problem. Seeks to Diminish and Remove Public Policy BarriersSeeks to Diminish and Remove Public Policy Barriers to Clear Solutions.to Clear Solutions. Campaigns for Effective and Sustainable Action.Campaigns for Effective and Sustainable Action. Aims to Influence decision makers at every level.Aims to Influence decision makers at every level. Can Call on a Broad Network of Participants.Can Call on a Broad Network of Participants. Can be Activated Quickly.Can be Activated Quickly. National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    4. 4. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Clarifying the MessageClarifying the Message Know your messageKnow your message Clearly identifies the issue/issues.Clearly identifies the issue/issues. Know your audienceKnow your audience Focuses on Target Audiences such as governmentFocuses on Target Audiences such as government officials, policy makers, employers, healthofficials, policy makers, employers, health professionals, the media.professionals, the media. Know your strategic process for the effectiveKnow your strategic process for the effective delivery of your messagedelivery of your message Has Clear Expectations of Results (More funding,Has Clear Expectations of Results (More funding, More research, Less Discrimination).More research, Less Discrimination). National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    5. 5. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance NPAF 2006 Federal Statements ofNPAF 2006 Federal Statements of Principles and PoliciesPrinciples and Policies Assisting UninsuredAssisting Uninsured AmericansAmericans Health InformationHealth Information TechnologyTechnology Association Health PlansAssociation Health Plans Pay for PerformancePay for Performance (P4P)(P4P) Physician PaymentPhysician Payment Drug Safety and EfficacyDrug Safety and Efficacy StandardsStandards Appropriations PrioritiesAppropriations Priorities Prescription DrugPrescription Drug ReimportationReimportation Stem Cell ResearchStem Cell Research
    6. 6. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Pending BillsPending Bills Pay for PerformancePay for Performance H. R. 3617H. R. 3617 –– Medicare Value-Based Purchasing for Physician’sMedicare Value-Based Purchasing for Physician’s Services Act of 2005Services Act of 2005 Would establish physician payment incentives based on meeting quality and efficiency standards; would replace Sustainable Growth Rate (SGR) feature of physician reimbursement schedule with payment update based on Medicare Economic Index (MEI). Sponsor:Sponsor: Rep. Nancy L. Johnson (R-CT) (introduced 7/29/2005). Status:Status: 8/5/2005 Referred to House Subcommittee on Health. (46 cosponsors) S. 1356S. 1356 –– Medicare Value Purchasing Act of 2005Medicare Value Purchasing Act of 2005 Would provide value-based payments (ranging from 1% in 2007 to 2% in 2011 of Medicare payments) to hospitals, physicians and practitioners, health plans, end stage renal disease (ESRD) providers and facilities, and home health agencies. Sponsor:Sponsor: Sen. Charles Grassley (R-IA) (introduced 6/30/2005). Status:Status: 6/30/2005 Referred to Senate Committee on Finance. (5 cosponsors)
    7. 7. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Pending BillsPending Bills Health ITHealth IT H.R. 4157H.R. 4157 –– Health Information Technology Promotion Act of 2005Health Information Technology Promotion Act of 2005 Would create statutory safe harbor to allow hospitals/providers to provide health IT and training, and require development of national strategic plan. Sponsor:Sponsor: Rep. Nancy L. Johnson (R-CT) (introduced 10/27/2005). Status:Status: 11/4/2005 Referred to House Subcommittee on Health. (45 cosponsors) H.R. 747H.R. 747 –– National Health Information Incentive Act of 2005National Health Information Incentive Act of 2005 Would provide loans, grants and tax subsidies, including refundable tax credit to small health care providers to support IT acquisition. Sponsor:Sponsor: Rep. Charles A. Gonzalez (D-TX) (introduced 2/10/2005). Status:Status: 2/25/2005 Referred to House Subcommittee on Health. (51 cosponsors) H.R. 4142H.R. 4142 –– Medicaid Transformation Grant Act of 2005Medicaid Transformation Grant Act of 2005 Would provide grants to state Medicaid programs for IT. Sponsor:Sponsor: Rep. Tim Murphy (R-PA) (introduced 10/25/2005). Status:Status: 11/4/2005 Referred to House Subcommittee on Health. (No cosponsors).
    8. 8. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Pending BillsPending Bills Health ITHealth IT S. 1418S. 1418 –– Wired for Health Care Quality ActWired for Health Care Quality Act Would establish quality measurement system, require development/adoption of standards/criteria for national interoperable system, and provide grants. Sponsor:Sponsor: Sen. Michael B. Enzi (R-WY) (introduced 7/18/2005); Related Bills: H.R. 4642, S. 1355. Status:Status: 12/16/2005 Referred to House Subcommittee on Health. Senate Reports: 109-111. (38 cosponsors) S. 1227S. 1227 –– Health Information Technology Act of 2005Health Information Technology Act of 2005 Would provide grants and tax incentives to health care entities for IT. Medicare payment amounts would be adjusted for providers who use IT with applications that improve quality/accuracy. Sponsor:Sponsor: Sen. Debbie Stabenow (D-MI) (introduced 6/13/2005). Status:Status: 6/13/2005 Referred to Senate Committee on Finance. (4 cosponsors)
    9. 9. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Pending BillsPending Bills S. 2340S. 2340 –– Community Cancer Care Preservation ActCommunity Cancer Care Preservation Act –– Would require drug price updates as changes occur;Would require drug price updates as changes occur; remove the prompt pay discount from the averageremove the prompt pay discount from the average sales price (ASP); extend 2005 quality cancer caresales price (ASP); extend 2005 quality cancer care demonstration project through 2006; providedemonstration project through 2006; provide 2%2% increase payments for drug handling/storage; andincrease payments for drug handling/storage; and requires the Secretary to report on cancer care andrequires the Secretary to report on cancer care and plans to increaseplans to increase clinical trial participation.clinical trial participation. Sponsor:Sponsor: Sen. Arlen Specter (R-PA) (introducedSen. Arlen Specter (R-PA) (introduced 2/28/2006).2/28/2006). Status:Status: 2/28/2006 Referred to Senate Committee on2/28/2006 Referred to Senate Committee on Finance. (4 cosponsors)Finance. (4 cosponsors)
    10. 10. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance CollaborationCollaboration A Key Ingredient to Legislative & Policy SuccessA Key Ingredient to Legislative & Policy Success Local Access ProjectsLocal Access Projects Health Information Technology Working GroupHealth Information Technology Working Group Consumer Empowerment Working GroupConsumer Empowerment Working Group One Voice Against CancerOne Voice Against Cancer Cancer Leadership CouncilCancer Leadership Council Advocates Alliance for ActionAdvocates Alliance for Action Patient Congress VII ~ June 26-28 ~ Washington, D.C.Patient Congress VII ~ June 26-28 ~ Washington, D.C. www.pc.patientadvocate.orgwww.pc.patientadvocate.org
    11. 11. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance The Consumer Empowerment WorkgroupThe Consumer Empowerment Workgroup Co-Chairs: Nancy Davenport-Ennis, NPAF Linda Springer, Director, Office of Personnel Management Karen Bell and Kelly Cronin from the Office of the National Coordinator, DHHS, will serve as coordinators for the workgroup. Members: Jodi Daniel, ONC/DHHS Lorraine Doo, CMS Kevin Hutchinson, Surescripts Robert Kolodner, Veterans Health Administration David Lansky, Markle Foundation Ross Martin, Pfizer Susan McAndrew, Dept. Health and Human Services David McLean, RxHub Davette Murray, Tri-Service Infrastructure Management Program Office Nancy Nielsen, American Medical Association Lynne Rosenthal, National Institute of Standards and Technology Scott Serota, BCBS Assoc. Steve Shihadeh, Microsoft Myrl Weinberg, National Health Council American Health Information CommunityAmerican Health Information Community (AHIC)(AHIC) National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    12. 12. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance American Health Information CommunityAmerican Health Information Community (AHIC)(AHIC) PortabilityPortability AffordabilityAffordability InteroperabilityInteroperability CertificationCertification PrivacyPrivacy SecuritySecurity National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 The AHIC and theThe AHIC and the Consumer Empowerment WorkgroupConsumer Empowerment Workgroup recognize that the following universal components of Health ITrecognize that the following universal components of Health IT must be addressed:must be addressed: The Consumer Empowerment Workgroup:The Consumer Empowerment Workgroup: The Workgroup will conduct a series of ten four-hour conferenceThe Workgroup will conduct a series of ten four-hour conference calls/meetings to be held throughout 2006. These calls/meetings willcalls/meetings to be held throughout 2006. These calls/meetings will comply with Federal Advisory Committee requirements.comply with Federal Advisory Committee requirements.
    13. 13. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance The purpose of this initiative, in part, is to develop aThe purpose of this initiative, in part, is to develop a comprehensive information resource to assist keycomprehensive information resource to assist key policymakers in Congress and at the Centers forpolicymakers in Congress and at the Centers for Medicare and Medicaid Services (CMS) as they examineMedicare and Medicaid Services (CMS) as they examine reimbursement corrections and consider recommendedreimbursement corrections and consider recommended steps of implementation of the new Medicare law.steps of implementation of the new Medicare law. As changes may need to be made in the law andAs changes may need to be made in the law and policymakers have requested assistance in monitoringpolicymakers have requested assistance in monitoring the impact of this implementation, it is hoped that thisthe impact of this implementation, it is hoped that this effort will help inform this process and work to ensureeffort will help inform this process and work to ensure access to quality cancer care.access to quality cancer care. National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 Global Access Project MissionGlobal Access Project Mission
    14. 14. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Global Access ProjectGlobal Access Project Member OrganizationsMember Organizations ALCASEALCASE American Cancer SocietyAmerican Cancer Society *Amgen*Amgen *Assoc. of Community Cancer Centers (ACCC)*Assoc. of Community Cancer Centers (ACCC) *Assoc. of Oncology Social Workers (AOSW)*Assoc. of Oncology Social Workers (AOSW) Assoc. of Pediatric Oncology Nurses (APON)Assoc. of Pediatric Oncology Nurses (APON) *Assoc. of Pediatric Oncology Social Work*Assoc. of Pediatric Oncology Social Work (APOSW)(APOSW) AstraZenecaAstraZeneca AventisAventis Cancer Research and Prevention FoundationCancer Research and Prevention Foundation *Coalition of National Cancer Cooperative*Coalition of National Cancer Cooperative GroupsGroups Community Oncology Alliance (COA)Community Oncology Alliance (COA) Eli LillyEli Lilly Friends of Cancer ResearchFriends of Cancer Research GenentechGenentech GlaxoSmithKlineGlaxoSmithKline *Intercultural Cancer Council (ICC)*Intercultural Cancer Council (ICC) International Myeloma FoundationInternational Myeloma Foundation International Oncology Network (ION)International Oncology Network (ION) *Institute of Health, Georgia State*Institute of Health, Georgia State *Leukemia & Lymphoma Society*Leukemia & Lymphoma Society MedimmuneMedimmune Men’s Health NetworkMen’s Health Network Millennium PharmaceuticalsMillennium Pharmaceuticals National Prostate Cancer CoalitionNational Prostate Cancer Coalition NovartisNovartis NurseWorksNurseWorks *Office of Native Cancer Survivorship (ONCS)*Office of Native Cancer Survivorship (ONCS) *Oncology Nursing Society*Oncology Nursing Society Ovarian Cancer National AllianceOvarian Cancer National Alliance PfizerPfizer *SCOOPS!*SCOOPS! The Lance Armstrong FoundationThe Lance Armstrong Foundation The Unbroken CircleThe Unbroken Circle *US Oncology*US Oncology US TOO International Prostate CancerUS TOO International Prostate Cancer Education & Support NetworkEducation & Support Network Y-ME!Y-ME! *Indicates participation as a member of the Gap Steering Committee National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    15. 15. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance 2004 & 2005 Studies2004 & 2005 Studies Practice Expense Reimbursement for Cancer Care Services: MethodologyPractice Expense Reimbursement for Cancer Care Services: Methodology Evaluation & Assessment of Alternative PoliciesEvaluation & Assessment of Alternative Policies, Donald W. Moran, The Moran, Donald W. Moran, The Moran CompanyCompany Geographic Proximity of Cancer CareGeographic Proximity of Cancer Care, Kathleen Dalton, PhD, University of North, Kathleen Dalton, PhD, University of North CarolinaCarolina Changes in Oncology Practices in the First Quarter of 2005, Survey of OncologyChanges in Oncology Practices in the First Quarter of 2005, Survey of Oncology Nursing Society Members,Nursing Society Members, Donald Moran, The Moran CompanyDonald Moran, The Moran Company Documentation of Pharmacy Cost in the Preparation of Chemotherapy Infusions inDocumentation of Pharmacy Cost in the Preparation of Chemotherapy Infusions in Academic and Community-Based Oncology PracticesAcademic and Community-Based Oncology Practices, University of Utah, University of Utah 2006 Studies2006 Studies Patient Access to Cancer Clinical Trails: An Assessment and Validation of the RolePatient Access to Cancer Clinical Trails: An Assessment and Validation of the Role of Community Oncology Practice,of Community Oncology Practice, Robert Comis, MD, Coalition of CancerRobert Comis, MD, Coalition of Cancer Cooperative GroupsCooperative Groups Medicare Modernization Act and Changes In Reimbursement for OutpatientMedicare Modernization Act and Changes In Reimbursement for Outpatient Chemotherapy: Do Patients Perceive Changes in Access to Care?,Chemotherapy: Do Patients Perceive Changes in Access to Care?, Kevin Schulman,Kevin Schulman, M.D., Duke UniversityM.D., Duke University Global Access Project StudiesGlobal Access Project Studies National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    16. 16. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Prior release of completed studies, NPAF andPrior release of completed studies, NPAF and GAP representatives, brief the following:GAP representatives, brief the following: MedPACMedPAC Centers for Medicare and Medicaid Services (CMS)Centers for Medicare and Medicaid Services (CMS) The White HouseThe White House Congressional Committees of JurisdictionCongressional Committees of Jurisdiction House Ways & MeansHouse Ways & Means House Energy & Commerce CommitteeHouse Energy & Commerce Committee Senate Finance CommitteeSenate Finance Committee Global Access Project OutreachGlobal Access Project Outreach National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996
    17. 17. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance National Patient Advocate FoundationNational Patient Advocate Foundation State Initiatives Prepared by Leslie Degnan Vice President, State Government Affairs
    18. 18. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance State Government AffairsState Government Affairs Leslie Degnan, VP (Washington, DC) Wendy Malcolmson, Regional Director (Seattle, WA) Over 60 State Policy Liaisons Volunteers concerned about access issues at state level Physicians, nurses, social workers, PR professionals, healthcare system professionals, survivors, families of patients, professional advocates Full-time, part-time, retired, student Learn NPAF positions and priorities Learn State health policy climate and meet thought leaders (legislators, physicians, community stakeholders) Educate on issues in dialog and proposed for legislation Training, networking, recognition
    19. 19. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance NPAF Presence in the CMS RegionsNPAF Presence in the CMS Regions I. Boston (CT, ME, MA, NH, RI, VT) 2 SPLs, 59 AAA II. New York (NY, NJ, U.S. Virgin Islands and Puerto Rico) 7 SPLs, 156 AAA III. Philadelphia (DE, MD, PA, VA, WV, and DC) 7 SPLs, 208 AAA IV. Atlanta (AL, NC, SC, FL, GA, KY, MS, TN) 14 SPLs, 511 AAA V. Chicago (IL, IN, MI, MN, OH, WI) 7 SPLs, 158 AAA VI. Dallas (AR, LA, NM, OK, TX) 4 SPLs, 561 AAA VII Kansas City (IA, KS, MO, NE) 7 SPLs, 109 AAA VIII. Denver (CO, MT, ND, SD, UT, WY) 6 SPLs, 44 AAA IX. San Francisco (AZ, CA, HI, NE) 7 SPLs, 161 AAA X. Seattle (AK, ID, OR, WA) 6 SPLs, 402 AAA TOTAL SPLs = 67 (Advocates Alliance for Action) AAA= 2,369
    20. 20. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance CMS RegionsCMS Regions
    21. 21. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Challenges in the StatesChallenges in the States Uninsured in America rose to 45.8 million- 15.7% of the population Employer-sponsored insurance continues to decline 16 million Americans are underinsured Public program enrollment—Medicaid and the State Children’s Health Insurance Programs (SCHIP)—is increasing in most states
    22. 22. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance States are Working on SolutionsStates are Working on Solutions Medicaid and State Children’s Health Insurance Program (SCHIP) Section 1115 waivers, and the Health Insurance Flexibility and Accountability Demonstration Initiative (HIFA) Creative financing and coverage demonstrations: California, Florida, Iowa, Massachusetts, New Mexico, Oklahoma, Vermont, Arkansas Limited benefit plans, group purchasing arrangements, premium assistance to small business. Deficit Reduction Act 2005 reduces funds for public programs while increasing states’ flexibility to innovate
    23. 23. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Massachusetts H. 4850Massachusetts H. 4850 ““An Act Providing Access to Affordable,An Act Providing Access to Affordable, Quality, Accountable Health Care”Quality, Accountable Health Care” Signed into law April 12, 2006Signed into law April 12, 2006 Individual and Employer MandatesIndividual and Employer Mandates Requires individualsRequires individuals to independently obtain and maintain a minimumto independently obtain and maintain a minimum level of health insurance by July 2007 (on 2008 tax form, coverage verifiedlevel of health insurance by July 2007 (on 2008 tax form, coverage verified by database; minimum level by age and rate published each Dec 1)by database; minimum level by age and rate published each Dec 1) Penalty- 50% of a minimum monthly premium; forfeiture of tax refund.Penalty- 50% of a minimum monthly premium; forfeiture of tax refund. (Exceptions: religion, hardship, no affordable coverage)(Exceptions: religion, hardship, no affordable coverage) Requires employersRequires employers (with 11 or more employees) to make a “fair and(with 11 or more employees) to make a “fair and reasonable premium contribution” to a company health plan or an annualreasonable premium contribution” to a company health plan or an annual “fair share employer contribution” of $295 per FTE“fair share employer contribution” of $295 per FTE EmployersEmployers who do not provide health plans also face a 10-100% “freewho do not provide health plans also face a 10-100% “free rider” surcharge for any employee who accesses the uncompensated carerider” surcharge for any employee who accesses the uncompensated care pool (after $50,000)pool (after $50,000)
    24. 24. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Massachusetts H. 4950Massachusetts H. 4950 Cafeteria Plan MandateCafeteria Plan Mandate The Health Insurance ConnectorThe Health Insurance Connector Insurance Market ReformsInsurance Market Reforms Health Insurance SubsidiesHealth Insurance Subsidies Medicaid Funds ShiftMedicaid Funds Shift A new Health Safety NetA new Health Safety Net Office and FundOffice and Fund
    25. 25. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Legislation in the StatesLegislation in the States MISSOURI SB 1231 to make cancer a qualifying diagnosis for Medicaid—IN COMMITTEE HB 1089 to cover routine care costs for patients in Phase I or Phase II clinical trials— BACK TO SENATE WYOMING SF0058 to expand SCHIP to parents of enrolled children—PASSED
    26. 26. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance proposals we are examiningproposals we are examining South Carolina legislation to raise cigarette taxes and direct revenues to Medicaid and SCHIP expansion- several different proposals with different tax increase: we hope to see one support Medicaid and SCHIP expansion Minnesota SF 3380 to provide medical treatment for breast or cervical cancer New York A5003A to require insurance policies to cover diagnosis and treatment of lymphedema
    27. 27. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance Patient Advocate Day ProclamationPatient Advocate Day Proclamation Whereas:Whereas: Access to healthcare is a basic human need and a shared societalAccess to healthcare is a basic human need and a shared societal responsibility; andresponsibility; and Whereas:Whereas: One patient who cannot access medical treatment or survive the financialOne patient who cannot access medical treatment or survive the financial hardship of illness is one patient too many; andhardship of illness is one patient too many; and Whereas:Whereas: The experience of a serious diagnosis must open the patient’s door toThe experience of a serious diagnosis must open the patient’s door to relevant clinical information, empowerment within the medical care system, timely andrelevant clinical information, empowerment within the medical care system, timely and sustained medical care and intervention, an ability to efficiently and effectively reachsustained medical care and intervention, an ability to efficiently and effectively reach both well-informed, independent decisions, and the benefit of appropriate supportboth well-informed, independent decisions, and the benefit of appropriate support which removes barriers to this care and empowerment; andwhich removes barriers to this care and empowerment; and Whereas:Whereas: The challenging complexity of ensuring healthcare to those in need mustThe challenging complexity of ensuring healthcare to those in need must not deter or distract us from the urgency of finding and creating solutions to thisnot deter or distract us from the urgency of finding and creating solutions to this persistent problem which requires immediate relief now; andpersistent problem which requires immediate relief now; and Whereas:Whereas: We are certain that only the continuous, comprehensive, cooperative, andWe are certain that only the continuous, comprehensive, cooperative, and collaborative action of [Your State’s] government, private industry, healthcarecollaborative action of [Your State’s] government, private industry, healthcare providers, and citizens can and must surmount this challenge;providers, and citizens can and must surmount this challenge; And So:And So: The State of ______ affirms its commitment to progressive, fiscally sound,The State of ______ affirms its commitment to progressive, fiscally sound, fair, and effective healthcare for every [State Citizen], and stands in voice and actionfair, and effective healthcare for every [State Citizen], and stands in voice and action as an advocate for the patient now and in preparation for when the challenge isas an advocate for the patient now and in preparation for when the challenge is greatest.greatest.
    28. 28. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance The First ProclamationsThe First Proclamations
    29. 29. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance South CarolinaSouth Carolina
    30. 30. Columbia, SC National Patient Advocate FoundationNational Patient Advocate Foundation Established in 1996Established in 1996 South Carolina Cancer Alliance 700 Thimble Shoals Blvd Suite 200 Newport News, VA 23606 Phone: 1-800-532-5274 Fax: (757) 873-8999 www.patientadvocate.org info@patientadvocate.org 700 Thimble Shoals Blvd. Suite 201 Newport News, VA 23606 Phone: 1-866-512-3861 Fax: (757) 282-7885 www.copays.org pap@patientadvocate.org 725 15th St. NW 10th Floor Washington, DC 20005 Phone: (202)-347-8009 Fax: (202) 347-5579 www.npaf.org action@npaf.org Contact UsContact Us

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