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 Article of Interest - Patients' Bill of Rights

Senator Debbie Stabenow and Tricia Luker on the Patients' Bill of Rights
from CNN, June 26, 2001 (edited)

CNN MODERATOR: Thank you for joining us today, Senator Debbie Stabenow and Tricia Luker, and welcome.

STABENOW: Hi, this is Senator Debbie Stabenow from Michigan, and I'm proud to be one of the sponsors of the Patients' Bill of Rights. I was also one of the sponsors when I was in the House, before coming to the Senate in January.

LUKER: I'm Tricia Luker, also from Michigan, and I'm here as a representative of all the families who are struggling with the HMOs and with insurance companies.

CNN MODERATOR: What are the current criticisms of operations of HMOs?

STABENOW: The concern right now is that families are paying for insurance, or getting insurance from their employer and trusting that health care will be available for their families. In too many instances now, the care they need isn't available. One example is access to emergency rooms. They simply aren't available like they were. One example is a family in Michigan, Sam and Susan Yamin. Sam and his wife live in Birmingham, Michigan. He owned a tree trimming business. He had a severe accident with a chain saw, and went to an ER in Michigan, assuming he'd receive care. They took him to surgery, and then were informed he was at the wrong emergency room. They literally had to pack him up and take him across Detroit to another ER. He didn't get the care he needed, and he lost his business and is permanently disabled. There's no accountability for the HMO who denied him care.

Another example is a case where a specialist is needed, or your insurance changes from one company to an HMO, and you or your children have been with a specialist for a long time, and they're not part of the HMO, and you can't continue getting treatment from that specialist. That's one of the things that Tricia Luker is here to talk about, what happened to her daughter Jessica, when her doctor of 12 years was not allowed to continue treating her. She had a severe illness and seizure disorder, and was not allowed to continue seeing that doctor when they had to switch to an HMO.

CNN MODERATOR: Ms. Luker, can you tell us a little bit about your experience?

LUKER: My daughter died in September of 1999. In March and April of 1999, Jessica had 60 grand mal seizures. Her neurologist felt it was important for her to have a surgery. On May 11, she had a VMS implant. We got a letter dated May 7, but postmarked May 12, which we received May 17. It told us that retroactive to May 1st, she was enrolled in a different HMO. So none of the care from May 1 on was covered, because we didn't have prior authorization. Then, when we wanted to continue with our neurologist, they said he wasn't part of the network.

When we asked if he could continue being her primary care physician, they refused. We called every doctor in the catalogue that they finally sent to us in June (we didn't even know who they were), and not one would take Jessica, because of the severeness of her disabilities, and the time it would take to care for her. We couldn't get follow-up care from her surgery in May. We had no recourse whatsoever. There was nothing we could do.

Families are vulnerable, individuals are vulnerable. The only people protected are the HMOs. I work at the parent training center in Michigan, and I had two calls this morning that were so poignant. One was from Lisa Zarnacki, and her son has Prader-Willie Syndrome. She's been fighting with her HMO to get services for him. The HMO case manager said that they wouldn't cover it, but that she could get it covered by having her parental rights terminated, and then she could get coverage through Medicaid. Jessica's neurologist-- I talked with him this morning, and he expressed frustration that once someone is referred to him through a primary care physician, and he recommends a test, it has to go BACK through the primary physician, and if they don't agree, then they don't get the test. So why bother sending them to a specialist if we can't get the care from them?

CHAT PARTICIPANT: Senator Stabenow, would you please contrast the Edwards-McCain-Kennedy bill versus the Frist-Breaux-Jeffords bill?

STABENOW: There are several differences, and first let me say that in each difference, the McCain-Kennedy-Edwards bill comes down on the side of patients and doctors and nurses and other providers. So we have over 500 groups of consumers, patients, families, care-providers that are supporting our bill, because it comes down on the side of providing care. The Frist-Breaux-Jeffords bill is more focused on the needs of the HMOs and insurance companies. For example, there is a difference in terms of accountability for HMOs.

It's interesting that there are only two groups of people in our country who are not held accountable for their behavior or decisions. One is exempted by the constitution, and that is foreign diplomats. The other, through a loophole, is HMOs. We're trying to correct that loophole, and want to keep it consistent with the way doctors and nurses and other health care providers are held accountable for health care decisions. So, in our bill, if a doctor overturns a medical decision, and the HMO overrides the doctor, and there is a bad outcome, they can be held accountable in state court, just like a physician. They would be subject to state law and state liability laws and so on. In the Frist-Breaux-Jeffords bill, all losses would go to federal court, which is much more difficult for consumers, for families.

There are huge backlogs in federal court, and it would be a very long, drawn-out, expensive process. So, it discourages families from being able to bring liability cases against the HMOs, which is why the HMOs like this approach. I should mention that we're not promoting a patient's bill of rights to promote lawsuits, but we want better options. We want people to have better ER care, not more lawsuits about ER care. We don't want the Lukers to be able to sue for care, we want them to receive good care. What we've found, in states that have passed laws, including Texas, is that there have been no more lawsuits, but better medical decisions.

CHAT PARTICIPANT: I am currently a medical student. As a future physician, why should I support the Patients' Bill of Rights?

STABENOW: We now, by the way, have the American Medical Association, as well as 44 separate state medical associations endorsing our bill, because it will give the ability for doctors to truly practice medicine again. As a future physician, I think you have a tremendous stake in the outcome of this bill. I'm sure you've had conversations with physicians who are frustrated at their inability to provide patients with the kind of care they believe the patient needs, because of an HMO or insurance company decision not to pay for the treatment.

We have physicians who have told us about tests that they can't give, prescription drugs that are needed, but aren't on a list somewhere, so they can't provide it, even if it's best for the patient. We certainly have specialists deeply concerned about the inability to provide special care when needed. Doctors are one of our strongest allies in this, because it's really about putting doctors and nurses in ch arge of medical decisions.

LUKER: I certainly agree with what Senator Stabenow has said. Families and physicians should make the decisions, not bean-counters in an ivory tower. They're not seeing first hand, they're second guessing a physician. We should have more respect for our physicians than that.

CHAT PARTICIPANT: Ms. Stabenow...Since health care costs will go up under the Patients' Bill of Rights, how is this bill good for the everyday working American?

STABENOW: Let me first say that health care has been going up, it went up about 10 percent last year, without a Patients' Bill of Rights. The main reason is because of the uncontrollable increasing costs of prescription drugs. When I talk to hospitals and businesses and individuals, it's clear that we have to address that cost, which is the driving force behind the increase in health care today. In terms of the cost of our bill, the argument has been made that by holding HMOs and insurance companies accountable for their decisions, we'll dramatically increase health care costs. That hasn't happened in the states that have a Patients' Bill of Rights. Secondly, the non-partisan Congressional Budget Office has indicated that the accountability provisions in the bill will increase health care costs by about 23 cents per person per month, who has health care. I think that's an extremely small price to pay to see that the insurance you have will actually provide the health care that you need.

LUKER: I think that when your child needs to see a neurologist, but you have to see the primary care doctor each time before I can see the neurologist, it's a double trip. There were times that the HMO did not want to pay for Jessica's medication, they wanted us to try other ones. After those trials, then they'll allow the originally prescribed medication. The situation causes more costs, because of the duplication of services.

STABENOW: I would agree.

CNN MODERATOR: Do you have any final thoughts to share with us?

STABENOW: I think that we have a number of different health care challenges in our country, and certainly addressing the uninsured is one, and the second is making sure that those with health insurance actually get the care that they assume they'll have available to them if they get sick. The Patients' Bill of Rights is necessary to guarantee that health care will be available for those who are paying for insurance. It's a part of the overall health care picture.

LUKER: We're so grateful that there are senators that are working for us, and trying to get this Patients' Bill of Rights passed. It's difficult when someone you love is ill, and you're at your most vulnerable and stressed, and you're trying to deal with bureaucracy and red tape through HMOs. We're so glad that some are stepping up to help. It's not just some of us, it's most of us. I sent an email on a parent's list, and said, "if you're having trouble with your HMO, please contact me," and we got over 100 hits in less than 24 hours from this very small list. We're being forced to deal with this when we're the most stressed, the most tired, the most vulnerable.

CNN MODERATOR: Thank you for joining us today.

STABENOW: Thank you.

LUKER: Thank you.

Senator Debbie Stabenow and Tricia Luker joined the chat via telephone from Washington, D.C. CNN provided a typist for them. The above is an edited transcript of the interview on Tuesday, June 26, 2001.

 

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NOTE: (ALL RESOURCES PRE-IDEA 2004 ARE FOR INFORMATIONAL/HISTORICAL RESEARCH PURPOSES ONLY)