# Presentation: 690106

## Beth Darnley, Chief Program Officer

**Patient Advocate Foundation:****Ensuring Equal Access to Healthcare for All Americans**

- Healthcare Access...
- The Patient’s Perspective

- Presented By:

## Patient Advocate Foundation

**A National Non-Profit, Tax Exempt, Patient Services Organization**

## Our History

- Cheryl’s example inspired insurance and reform measures in Virginia that continue to be mirrored in other states.  Cheryl’s inspiration lives on in every initiative in which we are involved as a foundation as we provide patient education, financial counseling and legal intervention for cancer patients.

**Our History**

## Our Mission Statement

- Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

- Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnosis through case managers and healthcare attorneys.

## Patient Testimonial

**Patient Testimonial**

- Anthony MirussoHead and Neck CancerFarmington, MI

**PAF negotiated access to necessary medications.**

## Direct Patient Services offered by PAF

**Patient Advocate Foundation specializes in mediation, negotiation and education on behalf of patients to resolve problems in the following areas:**

- Resolution of Pre-authorization Denials
- Lack of Access to Pharmaceutical Agents
- Insurance Appeals Assistance to Expedite Approval
- Application assistance with Social Security Disability, Medicare, Medicaid, SCHIPS,    and other social programs
- Resolution of Coding and Billing Errors
- Coordination of Benefits
- Lack of Access to Medical Devices and/or Surgical Procedures
- Counseling and Intervention with Debt-Crisis Issues
- Legal Advice and Intervention with Job Retention Issues
- Social Service Needs to include Transportation, Childcare and Housing

## Patient Testimonial

- “Words can not adequately express my gratitude to PAF for your tremendous help during the difficult time in my life. I pray that the kindness that you have shown to me will be multiplied back to you as answer to your heart's desire.”

- Joyce SpenceBreast CancerBessemer, AL

**PAF successfully rectified an error in billing of surgery charges.**

## Sources of Patient Referrals

- Internet
- Word of Mouth
- Voluntary Health Agencies
- American Society of Clinical Oncologists
- Susan G. Komen Foundation
- American Cancer Society National Call Center Referrals and State Offices
- Cancer Leadership Council
- U.S. Department of Labor / Pension Welfare Benefits Administration
- Coalition of National Cancer Cooperative Groups, Inc.
- Oncology Nursing Society
- Physicians
- CLC Members
- Episcopal Church
- Hispanic Referrals

**Sources of Patient Referrals**

## Media Coverage

**2003**
- Good Morning AmericaUS News & World ReportHematology Oncology News & IssuesTelemundo! NetworkThe New York Times

**2004**
- NBC Nightly News with Tom BrokawReader’s DigestFamily CircleWall Street JournalThe Boston Globe

## 2004 Summary of Patient Contacts for Assistance

**Confidential Report.  Exclusive Property of Patient Advocate Foundation**

| New Cases | 15,101 |
| --- | --- |
| Re-Opened Cases | 1,066 |
| Patient Assistance Program Cases(4/1/2004 - 12/31/2004) | 2,925 |
| E-mail Contacts for Direct Patient Services | 3,139 |
| Total Requests for Direct Patient Services | 22,131 |

- Total Case Contacts*		110,734

- * An average of 5.8 contacts are necessary per case to achieve resolution.

## 3,155,144

**Confidential Report.  Exclusive Property of Patient Advocate Foundation**

| Unique Web Visitors | 105,658 |
| --- | --- |
| Web Page Views | 443,335 |
| Web Browser Hits | 2,606,151 |

- Total Number of Patient Contacts for Information, Assistance and/or Patient Services from Web:

**3,155,144**

## Top Twenty State Breakdown of PAF Cases

**Top Twenty State Breakdown of PAF Cases**

**Source:** 2004 Patient Data Analysis ReportConfidential – Not to be distributed

## Patient Testimonial

- Irene BiseLeukemiaBedminster, NJ

- “Thanks again for all of your help this past year.  We could not have handled all this without you.  It has been two years since my mom was first diagnosed with leukemia and we first spoke to handle the medical bills.  Throughout these past two years you have been extremely helpful working with my mother and her insurers.  It took a lot of stress off of me so I was able to focus on more important matters.  It also helped us to have the money left over to donate to PAF.  Thank you so much for everything PAF.  Best wishes to you.”
-  - Carrie Torchio, daughter of the late Irene Bise

**PAF coordinated the billing for out-of-network treatment.**

## Top 10 Diagnoses of PAF Clients

**Source:** 2004 Patient Data Analysis ReportConfidential – Not to be distributed

## Top Ten Cancer Diagnosis Groups Handled by PAF

**Source:** 2004 Patient Data Analysis ReportConfidential – Not to be distributed

**Top Ten Cancer Diagnosis Groups Handled by PAF**

## Genders of PAF Clients

**Source:** 2004 Patient Data Analysis ReportConfidential – Not to be distributed

## Ages of PAF Clients

**Source:** 2004 Patient Data Analysis ReportConfidential – Not to be distributed

## Insurance Status of PAF Clients

**Source:** 2004 Patient Data Analysis ReportConfidential – Not to be distributed

## The Role of Consumer Groups in IT Development

- Provide historical data on utilization of existing IT healthcare resources and products
- Provide access to an existing national test market
- Provide data-based insight into access trends among specific patient populations

## Why Involve Patient Advocate Foundation?

- Ability to access and report on years of national patient healthcare data
- Established mechanisms for reaching target patient audiences through outreach and established referral sources
- Ability to capture consumer opinion data from diverse geographic regions, ethnic backgrounds, age groups and disease scopes
- Existing partnerships/collaborations with multiple consumer groups resulting in comprehensive input from diverse patient populations

## Patient Advocate Foundation Staff

- Professional Case Managers.
- National Network of Health Care Attorneys.
- Medical Oncologist Case Consultant.

- “I am going on my 13th year as a multiple myeloma survivor, which is fairly remarkable. I contacted Patient Advocate Foundation about two years ago, after seeing a small article in the Reader’s Digest, and they helped me tremendously. Facilities had been hounding me for payments that I should not have had to pay.
- After PAF contacted the different agencies, the phone calls stopped. **Now I am receiving checks back from medical facilities as a result of overpayment.** I thank God that there are people out there who are willing to help.”

- Fred MartinBristol, VA

## What is the CoPay ReliefTM(CPR), A Patient Assistance Program?

- CPRTM is one of 17 programs offered through Patient Advocate Foundation
- Co-Pay ReliefTM, a patient assistance program, is approved by the Office of Inspector General through the advisory opinion process and conforms to their requirements set forth by the Department of Justice to provide stability and uniformity in the operations of the program.
- The OIG ruling approves for Patient Advocate Foundation the operation of 27 disease silos including fifteen cancers.

## When health insurance just isn’t enough... 

**When health insurance just isn’t enough...**

- Breast Cancer
- Lung Cancer
- Prostate Cancer
- Select issues resulting from
- 	cancer treatment
- Macular Degeneration

- Co-Pay Relief may be the answer. The Patient Advocate Foundation helps insured patients with:

**Financial assistance for patients with health insurance. **
- Many patients facing serious illness just can’t afford all their pharmaceutical treatment expenses — even though they have health insurance. Some are even forced to choose between paying for their treatment or paying for groceries, utilities and other essentials. That’s where the Patient Advocate Foundation comes in. Through its Co-Pay Relief, *A Patient Assistance Program*, the Patient Advocate Foundation helps cover out-of-pocket co-payments for insured patients who qualify medically and financially.

**Where there’s help, there’s hope.**** **

## Summary of Patient Programs

**Patient Congress:**  This event includes attendees from across the United States including patients, caregivers, nurses, physicians, pharmaceutical representatives, insurance executives, advocacy group representatives, and state legislators.  The objectives of Patient Congress are:
- To empower patients to bring their voice to the attention of their elected officials in a positive, well informed coordinated initiative.
- To nurture strong relationships between the research community and patients by exchanging beneficial information to both parties and providing the chance for future focus group participation by our patients.

## Patient Congress VI

**June 21-23, 2005****Washington, DC**

- Past Speakers Have Included:
- Mark McClellan    Administrator     Centers for Medicare & Medicaid Services
- Richard Pazdur, MD    Director, Division of Oncology Drug Products    US Food & Drug Administration
- Senator Charles Grassley (R-IA)
- Representative Nancy Johnson (R-CT)

## Patient Testimonial

- Cora Brown
- Newport News, VA

**Patient Testimonial**

## Patient Educational OpportunitiesPAF Publications

- Managed Care Answer Guide
- The Patient Pal
- Your Guide to the Appeals Process
- The National Financial Resources    Guidebook for Patients: A State-by-    State Directory

- Additional Patient Resources

**Customized Patient Packs**
**www.patientadvocate.org**
- Internet Patient Services
- Online Registration for PAF Programs
- Online newsletters
- E-Commerce

- First My Illness, Now Job    Discrimination
- Your Guide to the Disability Process
- “A Greater Understanding”     Pamphlet Series

## Our Board Members

**William T. McGivney, Ph.D.***Board President*CEO, National Comprehensive Cancer Network

**Nancy Davenport-Ennis**President & CEO

**John H. Ennis, Jr.**Co-Founder

***Executive Board***

**Edward G. Connette, Esq.**
*Board Vice President*Lesesne & Connette

**Leah Arnett***Board Secretary*LA Associates Healthcare Consultants

**John L. Murphy***Board Treasurer*Cove Harbor Partners, LLC

**The Honorable Patrick Dougherty**Missouri State Senator

**The Honorable Phil Hamilton**Virginia House of Delegates – 93rd District

## Our Board Members

***Executive Board ******(cont’d)***

**Sheldon Weinhaus, Esq.**Counsel to the firm of Weinhaus, Dobson, Goldberg and Moreland

**Roy A. Beveridge, MD***Immediate Past President*
- Co-Director, Stemcell TransplantInova Fairfax Hospital

**Richard D. Carter, Esq.**Carter & Coleman

**Dianne Lamb**Director of Patient Advocates

**Christian Downs, MHA, JD**Deputy Executive DirectorAssociation of Community Cancer Centers

**Bruce Avery, MD**Hematology-OncologyKnoxville, TN

**John Caldwell **
- Certified Public Accountant
- Malvin, Riggins and Co., P.C.

**Rene S. Cabral-Daniels, J.D., M.P.H**.
- Director
- Office of Health Policy and Planning

## Our Board Members

***Scientific Board***

**Robert M. Rifkin, MD, FACP**Director, Rocky Mountain Blood & MarrowTransplant ProgramRocky Mountain Cancer Centers

**Dennis A. Gastineau**Director, Human Cell Therapy LaboratoryDivisions of Transfusion Medicine and HematologyMayo Clinic

**Otis W. Brawley, MD**
- Professor, Emory School of MedicineEmory University

**F. Marc Stewart, MD**Medical Director, SCCAProfessor of MedicineUniversity of WashingtonFred Hutchinson Cancer Research Center

**Richard L. Theriault, DO, MBA**Professor of MedicineMD Anderson Cancer Center

**Lori Williams, RN, MSN, DSN©, OCN, AOCN**MD Anderson Cancer Center & University of TexasHouston School of Nursing

***Honorary Board***

**Pearl Moore, RN, MN, FAAN**CEO, Oncology Nursing Society

**Doris Simonson**Mother of Cheryl Grimmel

**The Honorable Mary T. Christian**Virginia House of Representatives (Ret.)

**Paula Trahan-Rieger**Director of International AffairsAmerican Society of Clinical Oncology

**Leo Sands**
- Executive VP & Chief Administrative Officer US Oncology

## The Patient Advocate Foundation would like to thank The Agency for Healthcare Research and Quality for all that you do to improve patient access to care.

**Our Thanks**

## 700 Thimble Shoals BlvdSuite 200Newport News, VA 23606

- 700 Thimble Shoals BlvdSuite 200Newport News, VA 23606
- Phone:		1-800-532-5274
- Fax:		(757) 873-8999
- Internet:	www.patientadvocate.org
- E-Mail:		info@patientadvocate.org