Advocacy

Advocacy

Patient Bill of Rights

Contacting Congress

Advocacy and You

-- Don M., Mississippi

If not me...Who? If not now ....When? Your vote counts. Your opinion counts. You can make a difference. We are all advocates at one time or another. Each of us in the U.S. is a lobbyist, guaranteed by the First Amendment "to petition the Government for a redress of grievances." As individuals we have the right to address our legislators to support issues that affect our lives. Not only is this a right but it is a responsibility to let our legislators know how we feel. Every day of every Congressional Session, be it Federal, State or Local, issues that affect us are being determined and decided. Are we going to sit back and see the results of these decisions after they become law or are we going to be a pro-active part of the decision making process?

An understanding of how to lobby and advocate your needs to your representatives should begin with a basic understanding of how the United States government works. Federal and State Congresses are composed of two governing bodies. The Federal Congress is comprised of the Senate (two Senators from each State), and the House of Representatives (435 Members determined by population of each State). Individual State Congresses have a similar makeup. Each Legislator is elected by the constituency of the area they serve. Legislatures have the power to make laws. Both bodies (Senate and House of Representatives) must agree on a proposal (a bill) before it can be sent to the President for his signature. The President can veto the bill and send it back to the House and Senate. The veto can be overridden if both the House and Senate approve the bill by a two-thirds margin.

A bill can be introduced in either the Senate or House. A Senate Bill is identified by the Letter S. (i.e., S. 89) and a House Bill by the letters H.R. (i.e., H.R. 306). Legislation introduced by the members of Congress can come from many sources. Talking with constituents, media, congressional aides and staff, advocates and lobbyists, interest groups, and the Executive Branch (White House or various agencies), can originate an idea that may become a legislative proposal.

Legislation is grouped into three main categories: authorizing, appropriations, and entitlement. Authorizing bills usually set a ceiling on the maximum amount of funds that can be spent by a program for a period of three to five years but do not establish the funds to operate the program. The National Institutes of Health, Orphan Drug Tax Credit, and FDA ‘reform" are authorizing bills. Appropriation bills allocate funding for specific federal programs, such as providing funding for research into rare diseases. Medicare and Medicaid programs are examples of entitlement programs. These are measures that guarantee a certain level of benefits to persons who meet eligibility requirements set by law.

Before a bill is introduced you can make an impact by contacting your Legislators to express concerns that matter to you. During the process while a bill is in hearings both in subcommittees and committees, your voice can still be heard. Each Legislator has a dedicated staff that can have significant influence over the course and content of legislation.

Over the next few issues of the VHL Family Forum we will look at the next Congressional Session, the bills that effect us, and how to be an effective advocate for our needs and interests. We will look at how to address an issue, who to contact, and how to have the greatest impact on the decision making process.

Patient's Bill of Rights

by Deborah Zabarenko, Reuters, with comments by Don M.

President Bill Clinton endorsed a health care "bill of rights" for American consumers on Thursday, November 20, defending it against opponents who view the plan as the first step toward government-run medicine. "There are still those who oppose it, and that is their right," Clinton said at a White House ceremony in which he formally accepted the plan. "But this is a case where the national interest must prevail over the narrow interest, where the family’s interest must prevail over the fear of change."

Vice President Al Gore was more blunt in his remarks at the same forum: "If any special interests want to make this a war, it’s one that we’re proud to fight on behalf of America’s families." Families with VHL will be helped by this bill.

The health reform plan, modest in scope when compared with the Clinton administration’s failed effort to reform health care in 1993-94, would, among other things:

· Guarantee consumers’ right to be informed about health care plans in plain language. Health Maintenance Organizations (HMOs) often deny us the right to the presymptomatic testing we need to manage our health using clauses in the "fine print."

· Require health care plans to pay for emergency room visits if a "prudent layperson" would reasonably feel at risk of permanent injury without immediate care. For example, if a person with a history of heart disease went to the hospital for chest pain, and it turned out to be something less urgent, the HMO would still be required to pay the bill.

· Allow patients to appeal any denials of coverage to a review board. This review board must be independent of the insurance carrier. As long as the review board has financial interest in the insurance carrier, decisions will not be in the best interest of the patient!!

· Give patients direct access to specialists. HMO’s have been raising barriers to access to specialists, and penalizing staff doctors for recommending specialists. People with rare disorders like VHL need specialists to manage their health.

· Require health plans to give information about their physicians, including how many times they have performed certain procedures, whether they have been sued for malpractice and how they are paid. How many times have we been sent to a physician that has not ever dealt with a VHL patient when there are medical professionals close by but outside of our PPO/HMO that can and do provide care for VHL patients?

The plan is aimed at middle-class consumers who already have health care coverage, and Clinton promoted it in that light.

"Today, Americans receive consumer protection when they purchase cars, use credit cards, buy toys for their children," he said. "All this commission is recommending is that we extend that kind of protection when a person visits a doctor, checks into a hospital or buys a new health plan."

He also said it was likely to "stabilize" and "harmonize" U.S. society in general if consumers had more confidence in the cost, quality and accessibility of health care.

The American Medical Association, which represents U.S. physicians, said the rights guaranteed by the plan would preserve "the sacred bond between patient and physician, and will help restore the public’s confidence in the entire health care system." The insurance industry has been building a wall between the consumer and the physician, sometimes overruling the decisions of the physician.

But Rep. Bill Thomas, a California Republican who chairs a health care panel of the House Ways and Means Committee, said the plan was at odds with the original Bill of Rights, contained in the U.S. Constitution: "Today’s proposal extends the reach of federal power directly into people’s doctor/patient relationships." If we believe that we need these consumer rights, we need to state that clearly to our representatives.

Hours after Clinton’s announcement, Senators Joe Lieberman, a Connecticut Democrat, and John Chafee, a Rhode Island Republican, announced they would form a bipartisan task force to focus on health care, notably consumer information and cutting red tape. Send copies of your letters to these Reps. and encourage them in their activities.

John Sweeney, president of the giant AFL-CIO labor federation, gave the plan qualified support, calling it a "common sense set of answers" to health care problems, while saying that more might be done to serve workers’ needs.

Gail Shearer, a health care analyst with Consumers Union, which lobbies Congress on behalf of consumers, praised the administration plan."This is not about the government running health care," Shearer said in a telephone interview. "This is about making private companies accountable to somebody other than their shareholders ... it would mean that an HMO would no longer be the judge and jury when it came to treatment decisions."

Some 67 million Americans now participate in HMOs, and millions more have other forms of managed care. Shearer noted, however, that the plan is not yet law, and that in any event it does nothing for the more than 41 million Americans who have no health care coverage. Tens of millions more are under-insured or lack coverage for part of each year.

U.S. Voters -- Make your voices heard! 

A phone call or a one-page handwritten or typed letter to your legislators would make a difference!  A personal story about why you care can make a particularly strong impact.  Let them know this issue is important to their constituents. 

To find the names and addresses of your representatives,

• Senate: call 202-224-3121 or see http://www.senate.gov/senator/
• House: call 202-225-3121 or see http://www.house.gov/writerep/

A call or letter is more effective than an e-mail message.

As published in the VHL Family Forum  5:4, December 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.