The Legislative Process and Patient AdvocacyPresented by:Deborah Halinski, BSN, RN, CNN, CPHQ

Objectives• Discuss how ANNA’s Health Policy Statement impacts

nephrology practice

• Describe the Legislative Process

• Describe the healthcare provider role in patient advocacy

• Identify ways to become involved in promoting health care policy initiatives

ANNA Health Policy Statement• Our national organization has approximately 10,000

members practicing in many different areas: Hemodialysis Peritoneal Dialysis Therapies Chronic Kidney Disease Transplantation Continuous Renal Replacement Therapies

• Membership consists of:– RNs = 89%– APRNs = 6%– Others = 5%

Health Policy Statement (continued)• ANNA’s obligation is to set and update standards of patient

care, educating practitioners, stimulate research and disseminate findings, promote interdisciplinary communication and cooperation and addressing issues that may impact nephrology nursing.

• The Health Policy Statement was created to represent ANNA’s viewpoint on public policy issues relevant to the treatment of people with kidney disease and the practice of nephrology nursing

• The Health Policy Statement addresses issues related to: Nursing, Elements of Care, Transplantation, Medicare ESRD Program Management and Managed Care & Commercial Health Plans and the ESRD Population

Elements of ANNA Health Care Policy

• Nursing Assure and protect access to professional nursing care delivered by

educated, well-trained and experienced RNs for people with kidney disease

Promote nurse’s role in health policy advocacy through educational efforts, grassroot outreach and other activities that promote health and well-being of those affected by kidney disease

Include nurses in policy development at all levels of government, on all boards, commissions, expert panels, task forces and other groups setting policies and standards

Support efforts to resolve nursing shortage, including measures to assure funding to address shortage of nursing faculty

Nursing (continued) RNs experienced in dialytic therapy must be present to provide

assessment and supervision of patient care activities and unlicensed personnel during dialysis treatments

Use of Advanced Practice RNs in the management of people with kidney disease can result in cost effective high quality care

Advocate for policies and programs that promote and ensure health care environments that provide humane and dignified patient-centered care (includes dialogue, education and research on end-of-life issues and decision making on discontinuation or withdrawal from treatment)

**Any health care provider can play a part in supporting advocacy efforts**

Elements (continued)• Elements of Care

Nephrology nursing is directed toward assessing and treating the health needs of those with compromised kidney function and establish high standards of patient care that are routinely updated

Appropriate, quality treatment available to individuals with kidney disease or other diseases requiring renal replacement therapies

Supports legislative, regulatory and programmatic efforts that promote prevention and management of chronic kidney disease

Endorses the ESRD Prospective Payment System and other regulations from CMS and will continue to play an active role in implementation of changes. Also supports efforts to allow flexibility for the provision of daily or more frequent dialysis.

Supports legislative, regulatory and program efforts that promote disaster preparedness

Elements (continued)• Transplantation

Support for educational programs for the public and health professionals addressing the shortage of donor organs

Support for the federally funded Organ Procurement and Transplantation Network (OPTN) and the Scientific Registry of Transplant Recipients (SRTR)

Include organ/tissue donation language in all legislative and regulatory proposals related to advance directives, living wills, and durable power of attorney

Continued federal support of transplant activities including medical research and coverage of immunosuppressive drug therapy and legislative initiatives to extend immunosuppressive drug coverage for the life of the transplant organ

Educate insurers and other payers regarding success and cost effectiveness of organ transplantation

Elements (continued)• Medicare ESRD Program Management

Supports ESRD payment reforms that support delivery of care and are consistent with the standards of professional nephrology nursing and clinical practice guidelines/standards established by the renal community

Patients with CKD should have access to education and support & clinical care that may improve kidney function or delay progression of their disease

• Managed Care and Commercial Health Plans and the ESRD Population Involve nephrology professionals and/or utilize clinical practice guidelines

in the development of care delivery models Provide coverage for dialysis services for members who travel outside the

health plans coverage area Provide coverage for immunosuppressive agents for all transplant

recipients for the life of the transplanted organ(s)

Laws Begin as Ideas

House

• Representative sponsors a bill

• Bill get assigned to a committee and/or sub-committee for review – “Mark-up” in sub-committee, where

considered changes are often made

• If released by the committee, bill gets put on calendar to be voted on, amended or debated

• If bill passes by simple majority, 218 of 435, the bill moves to the Senate

Legislative Process

Legislative Process (continued)

• Bill assigned to another committee and/or sub-committee for review

• If released, goes through debate and vote.

• A simple majority of 51 of 100, passes the bill

Senate

Committees (House)The House’s committees consider bills and issues and oversee

agencies, programs, and activities within their jurisdictions.

• Agriculture

• Appropriations

• Armed Services

• Budget

• Education and the Workforce

• Energy & Commerce

• Ethics

• Foreign Affairs

• Homeland Security

• House Administration

• Judiciary

• Natural Resource

• Oversight and Government Reform

• Rules

• Science, Space and Technology

• Small Business

• Transportation and Infrastructure

• Veterans Affairs

• Ways and Means

• Intelligence

• Joint Economic Committee

• Joint Committee on the Library

• Joint Committee on Printing

• Joint Committee on Taxation

• Select Committee on Benghazi

Committees (Senate)

•Standing•Agriculture, Nutrition & Forestry

•Appropriations

•Armed Services

•Banking, Housing and Urban Affairs

•Budget

•Commerce, Science and Transportation

•Energy & Natural Resources

•Finance

•Foreign Relations

•Health, Education, Labor & Pensions

•Homeland Security & Government Affairs

•Judiciary

•Rules and Administration

•Small Business & Entrepreneurship

•Veterans Affairs

•Special, Select & Other•Indian Affairs

•Select Committee on Ethics

•Select Committee on Intelligence

•Select Committee on Aging

•Budget

•Commerce, Science and Transportation

•Joint•Joint Committee on Printing

•Joint Committee on Taxation

•Joint Committee on the Library

•Joint Economic Committee

Final Steps for a Bill

• Once passed, bill goes to a conference committee made up of House and Senate members

• Members work out any differences between House and Senate versions

• Resulting bill returns to House & Senate for final approval

• Government Printing Office prints revised bill in a process called enrolling

• President has 10 days to sign or veto the enrolled bill

Healthcare Provider Role as Advocate• Advocacy is defined as the act of pleading for,

supporting or recommending a cause.

• We spend long hours with our patients and their families making us well suited for that role

• Our knowledge and skills in patient education allow us to effectively translate information about medical diagnoses, procedures and medications into language they understand

• That knowledge and skill set, makes us perfect to advocate for patients and our profession at community and public levels

• We become an advocate because we believe in an issue or see a need for change

Healthcare Provider Role as Advocate(continued)

• We can advocate as an individual or as a group speaking on behalf of our patients or cause

• People may shy away from advocacy activities because it involves too much time and energy. Maybe, maybe not

• Don’t have to start big, start with small project. For example: sending an e-mail to a legislator, making a phone call

• Believing it is impossible to make a difference. Not true at all. Comments from the nephrology community are heard by governing bodies like CMS. For example: Five Star Program, being re-evaluated because the renal community demonstrated flaws in current design of that program

Healthcare Provider Role as Advocate(continued)

• Join your professional organization and/or state nurses association

• Educate yourself, colleagues (consider writing an article for

ANNA Journal), family and friends

• On a facility level– Clarifying patient concerns– Answering questions– Supplying information the patient needs to make

decisions about care– Supporting patients decisions

Healthcare Provider Role as Advocate(continued)

• Community involvement:– Lobby at local and national levels– Consulting with representatives from

groups when health legislation is being written

– Monitoring health care legislation and its enforcement

– Encouraging providers and payors– Educating consumers and lawmakers

***There were 47 ANNA members in attendance representing 25 states***

Becoming Active in Promoting Health Care Policy Initiatives• What can I do?

• Check with your professional organization and state nurses association for current issues.

• Look for opportunities to become more informed of health care policy issues. Some examples:

– ANNA Nurse in Washington Internship (NIWI) Grant (application deadline is Nov. 15, 2015)

– ANNA Health Policy Workshop (Held every 2 years, due in 2017)– Participate in Virtual Lobby Day (coincides with Health Policy

Workshop)– Technical Expert Panel (often look for volunteers to participate in

different issues)

Promoting Health Care Policy (continued)

• Educate policy makers– ANNA Kidney Disease Education Awareness– NRAA 2015 Facility Tour Toolkit

• Take the opportunity for comment periods that are open to the public. For example:– Conditions for Coverage– Dialysis Facility Report– Quality Incentive Program (QIP)

We are Not Alone…• ANNA National President submitted comments to CMS on behalf of its

membership regarding recommendations for future updates to the Conditions for Coverage for ESRD Facilities and for CMS-1614-P: Medicare Program; ESRD Prospective Payment System, Quality Incentive Program, and Durable Medical Equipment, Prosthetics, Orthotics and Supplies.

• Other organizations providing comments:– American Nurses Association– American Kidney Fund– American Society of Nephrology– Forum of ESRD Networks– Kidney Care Partners– National Renal Administrators Association– Renal Physicians Association– Renal Support Network

Capital Hill Visit

• June 22-23, 2015: ANNA Health Policy Workshop

• Learned about ANNA Legislative Initiatives and my role in the Health Policy Workshop

• Intensive workshop on legislative process

• Who the players are, who we might be meeting with

• How to navigate through the House and Senate buildings/system

114th Congress (2015-2016)• H.R. 1130 – Chronic Kidney Disease Improvement and

Treatment Act of 2015. This act would expand and improve coordination of federal chronic kidney disease and ESRD research efforts, remove barriers that dis-incentivize the use of home dialysis, and ensure the economic stability of the life-sustaining Medicare ESRD benefit.

• ANNA has urged members of Congress to cosponsor legislation to improve federal policy related to caring for individuals with CKD by addressing gaps in critical research, improving beneficiary access to treatments for CKD and create economic stability for providers caring for these individuals

• Status: referred to the Subcommittee on Health of both the House Energy and Commerce Committee and the House Ways and Means Committee

114th Congress (continued)• H.R. 1342 -Home Health Care Planning Improvement

Act of 2015. As the pool of nephrologists decrease, nurse practitioners, clinical nurse specialists and physician assistants are playing increased roles in the delivery of primary health care services. The use of these physician extenders is especially true in rural and medically underserved areas. Medicare recognizes Advanced Practice Registered Nurses (APRNs) for the care they provide in home health settings but requires a physician’s signature to certify a home health episode. The passing of this act would allow APRNs to certify home health plans for Medicare patients. This legislation would ensure that beneficiaries have timely access to the home health care they need in states where APRNs are licensed to provide such services.

114th Congress (continued)• H.R. 1342 (continued)

• ANNA has urged members of Congress to pass legislation that recognizes the APRNs role in home health care and ensures that Medicare beneficiaries have timely access to home health care services

• Status: Referred to the Subcommittee on Health of both the House Energy and Commerce Committee and the House Ways and Means Committee. This bill has had some positive forward motion since June and may be considered as part of a package of non-controversial health-care related bills in the fall.

114th Congress (continued)• H.R. 2713 - Title VIII Nursing Workforce

Reauthorization Act of 2015

• The Nursing Workforce Development Programs at the Health Resources and Services Administration (HRSA) supported the recruitment, education, and retention of an estimated 450,000 nurses between fiscal years 2006 and 2012. A report issued by HRSA predicts that the percentage of unfilled nursing positions will increase 29% by 2020

• ANNA has requested a funding level of $244 million for the Nursing Workforce Development programs at HRSA in FY 2016.

• Status: Referred to the Subcommittee on Health, may not increase funding but would not lose any current funding

The Big Meeting Day• ANNA members were partnered with other representatives from

their state for some congressional visits

• Armed with fact sheets, questions to ask Representatives and/or Senators

• Appointments with Kristin Gillibrand, Chuck Schumer and Kathleen Rice

• We did our pitch on the bills and got the following responses:

• Gillibrand,’s aides-maybe, would consider supporting

• Schumer’s aides – yes to support. Staffer advised us that Home Health Planning Bill was in mark-up in Finance committee and hoping to get score and any technical assistance by July. She also mentioned that the Chronic Disease Care Bill was coming up and that it would include ESRD

• Rice – met personally with Rep. Rice. Had lots of question regarding CKD and transplantation and concerns of nurses. Had questions regarding the bills presented and got yes for support of 2 bills and the workforce funding

Recap

• ANNA Health Policy Statement provides a framework of many aspects of nephrology care that impact how we practice and provide care to our patients

• ANNA Health Policy Statement is a great resource for learning about opportunities to get involved

• Advocacy – there is a variety of ways to become involved in patient advocacy, some small and some big. The hardest step is the first one

• The Legislative Process can be overwhelming but learning a little bit about the process can help us understand the importance of becoming involved.

Final Thoughts

I’m thankful to be a nurse because- I get to advocate for people who are at their weakest

From: Career Quotes

I challenge each of you to do one thing to advocate for patients and yourselves.

References/Resources

• American Nephrology Nurses Association

– www.annanurse.org/HealthPolicy

• American Nurses Association

– www.nursingworld.org

• Kidney Care Partners– www.kidneycarepartners.com

• National Council of State Boards of Nursing

– www.ncsbn.org

• National Kidney Foundation– www.kidney.org

• New York State Nurses Association

– www.nysna.org

• U.S. House of Representatives

– www.house.gov

• U.S. Senate– www.senate.gov