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Treatment Action Network Alert

Congress to Make Final Decision on Patients Bill of Rights

February 22, 2000

Your Action is Needed to Ensure Strongest Managed Care Protections Possible!!

Congress has recently reconvened after its winter recess. At the end of February, a joint House/Senate conference committee will meet to work out differences between two Patients Bill of Rights bills, intended to provide protections for managed care consumers.

In July of 1999, the Senate passed its version. The Patients Bill of Rights Act of 1999 (S. 1344). This legislation, sponsored by Senator Trent Lott (R-MS), does not provide adequate protections and only covers about one-third of Americans (see background information below). In October 1999, the House passed its version, the Bipartisan Managed Care Improvement Act of 1999 (H.R. 2723). This bill, co-sponsored by Representatives John Dingell (D-MI) and Charles Norwood (R-GA), is supported by most HIV/AIDS and other healthcare consumer advocates and provides many real protections for people living with HIV/AIDS.

The Senate bill received only Republican support, with all Democrats and two Republican senators voting against it. However, the House version was approved by a bipartisan majority, with 68 Republicans breaking from the leadership and voting for the legislation. President Clinton has indicated his support for the House version.

The joint House/Senate conference committee made up of 12 senators and 21 representatives will soon meet to work out differences between the two bills. The final product from the committee will then be sent to the full House and Senate for a vote before going to the president for his signature or veto. Congressional leadership has indicated that it wants to finish work on managed care legislation before Easter. Your letters and phone calls are needed immediately to influence the work of the committee and ensure that it supports the strongest protections!


Background on H.R. 2723 and S. 1344

Congress has been working on a "Patients Bill of Rights" for over two years. In 1998, neither the House nor the Senate was able to pass legislation. Last year, the House passed H.R. 2723 and the Senate approved S. 1344. However, the joint House/Senate conference committee was not convened in time for legislation to be sent to the president before Congress adjourned for the year.

While both pieces of legislation are touted as providing meaningful protections for managed care consumers, there are significant differences between them.

The Senate bill would apply to even fewer individuals. This legislation only covers those whose employers act as the insurer for their employees and are called "self-insured." In other words, the employer designs the insurance plan, pays the claims, and assumes financial risks involved. These employers are generally only very large companies. You may want to ask your employer if you fall in this category. The House bill would cover employees regardless of whether their employer is self-insured or simply pays for the insurance for their employees.

However, those who receive health coverage through Medicare or Medicaid, who do not receive coverage through their employer but buy their own insurance, or who receive coverage through a public employer (such as the federal, state, or local government) would not be affected by either legislation.

The main differences between the two bills lie in the protections offered by each proposal. Advocates are supporting the House provision because it offers significant consumer protections not included in the Senate version.

H.R. 2723 Contains Important Protections Not Found in S. 1344:

  • Allows specialists to be a primary care provider for people living with a chronic or life-threatening illness.
    This is critical for people living with HIV/AIDS who need access to an HIV specialist in order to get adequate care and appropriate coordination of care and referrals.

  • Standing referrals to specialists.
    This provision allows individuals to get approval to see a specialist on an ongoing basis, without having to get a referral for every visit.

  • Allows access to out-of-network providers and care.
    This allows individuals to access care or providers not included in the plan.

  • Access to clinical trials.
    This would prevent insurance companies from refusing to cover routine health care expenses for individuals who join a clinical trial. The Senate version only covers those participating in clinical trials for cancer.

  • Allows for an external review.
    Under the House plan, an individual can appeal -- or get an outside opinion about -- a health plan's denial of benefits if it is based on the decision that the service is not medically necessary or appropriate, or that the service is "experimental." Under the Senate plan, an external appeal is only allowed if the claim poses a significant risk of putting the individual's life or health in jeopardy, or if the service is considered "experimental." Additionally, an extremely important difference in the review process is that in the Senate plan the health plan chooses the reviewer and this person would only decide whether the plan followed its own procedures, not whether or not the patient needs the care.

  • Provides the right to sue for damages.
    The House plan allows individuals to hold managed care plans accountable for their decisions. However, health plans that comply with an external reviewer's decision may not be held liable for damages. The Senate plan does not allow the right to sue.

Both Bills Contain Important Managed Care Protections:

  • Access to emergency rooms.
    Both versions would allow an individual to go to the nearest emergency room without calling their health plan first.

  • Access to all prescription drugs.
    This is particularly important for people with HIV/AIDS. Both bills would allow doctors to prescribe treatments that are not on the health plan's list of approved drugs, but are medically necessary.

However, it's important to remember that the Senate version only covers a small number of insured people, so many would not receive these protections.


While even the House version of the Patients Bill of Rights may not be everything advocates had hoped for, it is a strong, comprehensive piece of legislation that goes a long way toward ensuring protections for many managed care consumers. In particular, it offers many meaningful protections for people living with HIV/AIDS and other life-threatening diseases.

In addition, there are political reasons to advocate for the strongest bill possible. There is currently bipartisan support in Congress and the public -- as well as the Clinton Administration -- for managed care reform legislation. This could change after the November election. It is important to join this battle for appropriate protections for managed care even though this bill won't affect the millions of uninsured Americans. As we advocate for more access to care for those who have no insurance coverage, we also have to fight for the quality of the health care that does exist. We must ensure that people have access to quality care with appropriate protections for themselves and their loved ones. Finally, if Congress passes a weak bill, and it is signed into law, many policy-makers and representatives of the health care industry will consider their work done and we might not see stronger protections for a long time.

Action Needed for This Alert

Write or call your U.S. Representative and two U.S. Senators this week.

Urge them to support the strong protections included in H.R. 2723 and to reject the inadequate protections and coverage in S. 1344. Ask them to convey their support to members of the conference committee. If your representative or senator is on the conference committee (see list below), it is extremely important that you contact him or her as soon as possible.

You can use the sample phone message and letter below to help craft your message.

Sample Phone Message

"I am calling regarding the Patients Bill of Rights, which is currently in conference committee. I support the provisions included in H.R. 2723, and urge Representative/Senator_________________to urge members of the conference committee to support the protections included in that bill."

Sample Letter for H.R. 2723 and S. 1344

The Honorable______________
U.S. Senate or U.S. House of Representatives
Washington, DC 20510 (Senators) or 20515 (Representatives)

Dear Senator/Representative ________________:

I am writing regarding the Patients Bill of Rights, which is currently being reviewed in conference committee. In particular, I support the strong consumer protections offered in H.R. 2723. I urge you to support those protections, and to convey your support to members of the conference committee.

[Insert personal story here. If you or someone you care about would be affected by this legislation, discuss that here. You might want to talk about any difficulties you or others may have had with managed care plans that demonstrate the need for such legislation. This would also be a good place to discuss why these protections are particularly important for people living with HIV/AIDS]

The Senate version, S. 1344, does not provide adequate protections, nor does it cover enough people who are insured through managed care plans. I urge you to reject this bill and support meaningful managed care reform. Again, please support the provisions included in H.R. 2723.

Thank you for your consideration.

[Your name]

Action Tip

Where to Contact Your Elected Officials?
District or D.C. office?

When communicating with your elected officials, it is usually fine to call their district office. Messages are collected and given to the legislator. However, when you are calling about a bill or issue that will be voted on quickly -- such as the one in this Alert, we recommend you call the Washington, D.C. office directly so that your opinion is documented immediately.

You can reach your U.S. senators and representatives through the Capitol Switchboard at (202) 224-3121.

Managed Care Reform Conference Committee

The following Members of Congress make up the conference committee that will create the final Patients Bill of Rights. If your representative or senator is on this list, it is particularly important that you provide your input on this issue!

James Jeffords (R-VT)
Judd Gregg (R-NH)
Bill Frist (R-TN)
Tim Hutchinson (R-AR)
Don Nickles (R-OK)
Phil Gramm (R-TX)
Michael Enzi (R-WY)
Edward Kennedy (D-MA)
Christopher Dodd (D-CT)
Tom Harkin (D-IA)
Barbara Mikulski (D-MD)
John Rockefeller (D-WV)
Thomas Blilely (R-VA)
Michael Bilirakis (R-FL)
John Shadegg (R-AZ)
Bill Archer (R-TX)
William Thomas (R-CA)
Nancy Johnson (R-CT)
Jim McCrery (R-LA)
John Boehner (R-OH)
Jim Talent (R-MO)
Ernest Lee Fletcher (R-KY)
Porter Goss (R-FL)
Dan Burton (R-IN)
Joe Scarborough (R-FL)
John Dingell (D-MI)
Frank Pallone (D-NJ)
Charles Rangel (D-NY)
Pete Stark (D-CA)
William Clay (D-MO)
Robert Andrews (D-NJ)
Henry Waxman (D-CA)
Marion Berry (D-AR)

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