Patient Advocacy for Healthcare Quality Earp, French, Gilkey

1. Patient Advocacy for Healthcare QualityEarp, French, Gilkey Chapter 16 Access to Healthcare: Using Data from a Nonprofit Advocacy Practice to Drive Policy Change

2. Advocacy and the Economic Impact of Illness The high cost of health care and insurance has serious negative consequences for many: In 2001 about 1.9 to 2.2 million Americans experienced medical bankruptcy More than ¾ of those who went bankrupt had insurance at the onset of their illness Many confront losses in cross-generational assets (i.e. parents/grandparents financially support adult children) as they try to pay for treatments(Himmelstein et al., 2005)

3. The Economic Impact of Illness: Health Insurance Health insurance influences when/whether individuals seek necessary medical care, how much debt they accrue when they do obtain care, and health outcomes. Studies show insurance may: Reduce mortality rates by 10% to15% Improve annual earnings by 10% to 30% Increase educational attainment (Rowland, 2004)

4. The Limitations of Insurance 46 million Americans are uninsured; even having insurance does not guarantee access to healthcare. The number of under-insured Americans has increased sharply with erosions in employer-based benefits/increased cost-sharing for Medicaid recipients Insurers initially deny 75% of pre-service appeals for surgical procedures, office consultations and diagnostic tests (Rand Study, 2004)

5. National Efforts in Insurance Reform Since 1997, reform efforts have addressed 2 major issues: Patient access to quality care Establishing consumers’ right to insurance portability Guaranteeing consumers’ entitlement to maintain coverage at the same cost, even when moving from one health plan to another Ballooning health care expenditures Changing how the Centers for Medicare & Medicaid Services (CMS), as a government health care purchaser, determines levels of provider reimbursement and payment for services

6. Insurance Reform: HIPAA The Health Insurance Portability and Accountability Act (HIPAA) passed in 1996: Mandated health insurance portability Amended the Employee Retirement Income Security Act (ERISA) to: Guarantee continued health insurance coverage of qualified individuals even after those individuals changed jobs Include a six-month look-back period (meaning that insurers can “exclude” coverage for illnesses diagnosed up to six months before, and twelve months after, a consumer enrolls) Require that pre-existing condition exclusions be offset by a period of certified credible coverage

7. Insurance Reform: Other Efforts The Medicare Prescription Drug Improvement and Modernization Act of 2003 (MMA) Included provisions intended to combat waste, fraud and abuse Authorized a much debated outpatient prescription drug coverage program known as Medicare Part D Revised the Medicare managed care program so that patients over age 65 could receive broad insurance coverage Advisory Commission on Consumer Protection and Quality in the Health Care Industry’s Consumer Bill of Rights and Responsibilities (1998) Breast and Cervical Cancer Prevention and Treatment Act of 2000

8. Insurance Reform: The Need for Nonprofit Advocacy Little support for comprehensive solutions at federal or state levels. Congress failed to pass the Patient Bill of Rights Domestic funding redirected to international security initiatives The National Cancer Institute’s research budget reduced, despite combined advocacy of a 57-group coalition, One Voice Against Cancer Health care advocacy organizations can make significant contributions in such cost-cutting environments.

9. Case Study in Nonprofit Advocacy: PAF and NPAF 1. The Patient Advocate Foundation (PAF) is a national patient services organization. PAF: Provides counseling/legal support to patients who need assistance in resolving issues of debt crisis, job retention, and insurance matters caused by a serious illness Rigorously documents clients’ cases in databases that provide valuable information about different populations’ current advocacy needs 2. The National Patient Advocate Foundation (NPAF) is a nonpartisan lobbying organization. NPAF: Uses PAF data in its efforts to improve patients’ access to care and appropriate treatments at the state and federal levels through legislative and policy reform

10. Case Study: PAF PAF directly assists patients while collecting data re. advocacy. Access to pharmaceuticals 40% of PAF’s inquiries involved lack of access to prescription medications PAF’s Co-Pay Relief Program provides cash co-payment assistance for pharmaceuticals to medically/financially qualified patients Preauthorizations Preauthorizations are often denied for complex therapies, new medical devices, or newly FDA-approved drugs PAF negotiates reversals of denials on a case-by-case basis Billing disputes PAF helps clients resolve billing disputes; over half its interventions result in reimbursement to patients based on overpayments

11. Case Study: NPAF Data PAF allow NPAF to document and report on national-level trends. NPAF provides: Data. In 1999, Florida’s Medicaid program announced plans to withdraw reimbursement for products routinely used by cancer patients. NPAF used data from Patient Advocate Foundation’s files to intervene directly with the Governor’s office to restore benefits. Testimonials. Patients PAF has helped sign media and testimony releases, allowing them to be interviewed by national media and/or included as witnesses in policy debates at state and federal levels. These patients provide faces, voices, and stories to support change. Public Opinion. In 2003 NPAF commissioned a survey of 3000 Iowans’ attitudes toward “brown-bagging” of cancer products, with 2,880 survey participants responding unfavorably to the direct mail process. Using this data, NPAF helped restore the previous delivery system in less than two months.

12. Conclusion PAF and NPAF are innovative embodiments of the broader patient advocacy movement. The organizations represent the work of a dedicated individual who, with the help of her supporters, has translated her personal experience of advocacy into broader efforts The organizational structure of PAF and NPAF is two-pronged, with one organization helping individual patients resolve difficulties in navigating the healthcare system while the other addresses policy-level factors causing those difficulties PAF and NPAF reflect a growing sophistication among advocates; they increasingly use data to drive their interventions and business knowledge to inform their organizational structure and activities