[Congressional Record Volume 144, Number 111 (Friday, August 7, 1998)]
[Extensions of Remarks]
[Pages E1621-E1623]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


                        PATIENTS' BILL OF RIGHTS

                                 ______
                                 

                            HON. GREG GANSKE

                                of iowa

                    in the house of representatives

                        Thursday, August 6, 1998

  Mr. GANSKE. Mr. Speaker, soon the House will adjourn for the August 
District Work Period. Members will scatter to the four corners of the 
nation and return to their hometowns.
  Over the next month, we will have the time to speak with our 
constituents at countless county and state fairs, town hall meetings, 
and other gatherings, both formal and informal. It will be an 
opportunity for us to communicate what we have done and for the voters 
to tell us what they would like Congress to do.
  I think that we will find it next to impossible to pick up a 
newspaper or hold a town meeting without hearing another story about 
how a managed care plan denied someone life-saving treatment.
  And no public comment poll could convey the depth of emotion about 
this issue as well as movie audiences around the country who 
spontaneously clapped and cheered Helen Hunt's obscenity-laced 
description of her HMO.
  Mr. Speaker, I rise today to offer some thoughts on what we are 
likely to hear from our constituents about this issue over the next 
month.
  Two weeks ago, the House approved a Republican Task Force bill which 
was advertised as addressing consumer complaints about HMOs. But, Mr. 
Speaker, I think an examination of the fine print is in order, 
particularly when we compare it to the Patients' Bill of Rights, a bi-
partisan proposal I support which has been endorsed by close to 200 
national groups of patients and providers.
  Last year, Congress and the President were able to reach agreement on 
a plan to save Medicare from bankruptcy. Included in that package were 
several provisions to protect seniors enrolled in Medicare HMOs. One of 
the most important was language to ensure that health plans pay for 
visits to the emergency room.
  We had heard frequent complaints that health plans were denying 
payment if the individual was found, in the end, not to have had a 
condition requiring ER care. The best example is the man who 
experiences crushing chest pain. The American Heart Association says 
that is a sign of a possible heart attack and urges immediate medical 
attention.
  Fortunately, there are other causes of crushing chest pains, but 
seniors whose EKG were negative were being stuck with a bill for the 
emergency room care, since, in retrospect, the HMO said it was not an 
emergency after all.
  The Medicare law passed last year took care of this problem, by 
ensuring that plans paid for emergency room services if a ``prudent 
layperson'' would have thought a visit to the ER was needed. This 
prevented the sort of ``hindsight is 20-20'' coverage denials that 
consumers had complained about.
  The Patient Bill of Rights, which I support, would have extended the 
same protections to consumers in all health plans. Instead, the 
Republican Task Force bill passed by the House contains a watered-down 
version of the prudent lay person rule.
  On Tuesday, the New York Times published an excellent article by 
their noted health reporter, Robert Pear. In it, Mr. Pear outlined just 
how different the protections in the Republican Task Force Bill are 
from those we passed for Medicare and Medicaid.
  A key difference is exactly how much patients will have to pay for 
emergency care. The Patients' Bill of Rights, which I supported, 
provides that patients could not be charged more money if they seek 
care in a non-network emergency room.
  By contrast, the Republican Task Force allows the health plan to 
impose higher costs on those who are so careless as to allow 
emergencies to befall them in places not close to a network-affiliated 
hospital!
  Mr. Speaker, consider what this means. HMOs require enrollees to use 
certain hospitals, because the plan has some financial arrangement with 
them.
  But when a young child splits his head open by falling down a flight 
of stairs, I fail to see that any good is served by giving patients a 
financial incentive to delay care until they can get to one of the HMOs 
own emergency rooms.
  Consider the case of James Adams. Age: six months. At 3:30 in the 
morning, his mother Lamona found James hot, panting, and moaning. His 
temperature was 104 F.
  Lamona called her HMO and was told to take James to Scottish Rite 
Medical Center. ``That's the only hospital I can send you to,'' the 
Medicare nurse added.
  ``How do we get there?'' Lamona asked.
  ``I don't know,'' the nurse said. ``I'm not good at directions.
  About 20 miles into their ride, they passed Emory University's 
hospital, a renowned pediatric center. Nearby were two more of 
Atlanta's leading hospitals, Georgia Baptist and Grady Memorial.
  But they didn't have permission to stop there and pressed on. They 
had 232 more miles to travel to get to Scottish Rite.
  While searching for Scottish Rite, James' heart stopped. When James 
and Lamona

[[Page E1622]]

eventually got to Scottish Rite, it looked like the boy would die.
  But he was a tough little guy. And despite his cardiac arrest due to 
the delay in treatment by his HMO, he survived.
  However, the doctors had to amputate both of his hands and both of 
his feet because of gangrene.
  All this is documented in this book, ``Health Against Wealth.'' As 
the details of James' HMO's methods emerged, the case suggested that 
the margins of safety in HMOs can be razor thin. In James' case, they 
were almost fatal, leaving him without hands or feet for the rest of 
his life.
  Think of the dilemma this places on a mother struggling to make ends 
meet. In Lamona's situation, under the Republican Task Force bill, if 
she rushes her child to the nearest emergency room, she could be at 
risk for charges that average 50 percent more than what the plan would 
pay for in-network care. Or she could hope that her child's condition 
will not worsen as they drive past other hospital an additional 20 
miles to get to the nearest ER affiliated with their plan. And woe to 
any family's fragile financial position if this emergency occurs while 
they are visiting relatives in another State!
  Mr. Speaker, the Patients' Bill of Rights would ensure that consumers 
would not have to make that potentially disastrous choice.
  A second key difference between the Republican Task Force bill and 
the protections already enacted for Medicare is that the Republican 
bill does not require any payment for services other than an initial 
screening. After that, payment must be made only for additional 
emergency services if a ``prudent emergency medical professional'' 
would deem them necessary. Moreover, the GOP bill added a new burden on 
emergency room doctors, requiring them to certify in writing that such 
services are needed. Talk about bureaucracy!
  Robert Pear's New York Times article quoted John Scott of the 
American College of Emergency Physicians. Mr. Scott's comments bear 
repeating, because I think they illuminate the weaknesses of the Task 
Force bill:

       We have more than a century of common law and court 
     decisions interpreting the standard of a `prudent lay 
     person,' or `reasonable man,' as it used to be called. But 
     this new standard of a `prudent emergency medical 
     professional' was invented out of thin air. It creates new 
     opportunities for HMOs to second-guess the treating physician 
     and to deny payment for emergency services.

  Mr. Pear's article also takes a hard look at the difficult issue of 
medical records privacy and concludes that ``on this issue, took the 
details have provoked a furor.''
  He noted that privacy advocates were amazed to learn that the 
Republican Task Force bill authorizes the disclosure of information 
without an individuals consent for a broad range of purposes, including 
risk management, quality assessment, disease management, underwriting, 
and more.
  And the Republican bill considers disclosure for ``health care 
operations'' permissible. This is a term so broad that critics say it 
would allow the transfer of patient information to companies marketing 
new drugs.
  Commenting on these flaws, noted privacy expert Robert Gellman said 
that the Republican bill ``gives the appearance of providing privacy 
rights. But it may actually take away rights that people have today 
under state law or common practice.''
  Mr. Speaker, I ask unanimous consent that the entire text of the 
Robert Pear article be printed in the Congressional Record at this 
point.
  Mr. Speaker, these are but two examples of flaws that may not be 
apparent on a quick read of the Republican Task Force bill but which 
become apparent upon closer examination.
  I wish I could say that those are the only two provisions in the 
House-passed GOP managed care reform bill which--to borrow from the old 
TV ad--may taste great but is certainly less filling.
  I think every Member of Congress would agree that the best health 
care bill is one that delivers people the services they need, when they 
need them. Remedies such as internal and external appeals and access to 
the courts are needed backstops, but our first goal should be to 
require that HMOs provide needed care. On that count, there is no 
comparison between the two bills.
  Here is a partial list of protections contained in the Patients Bill 
of Rights but which were not included in the Republican Task Force 
proposal:
   First and foremost, the Republican Task Force bill could actually 
make the situation worse by creating Association Health Plans which 
will be beyond the reach of state regulations. For years and years, 
States have shown themselves able to craft workable consumer 
protections for health insurance. But thanks to a 25 year old federal 
law known as ERISA, millions of Americans are in health plans regulated 
by the federal government and are therefore beyond the reach of state 
consumer protections.
  Instead of giving consumers more control over health care, the 
Republican Task Force bill actually places more people in ERISA-
regulated health plans. Does this solve our health care problems? 
Certainly not. Does it add to them by denying people the protections of 
state law? Definitely.
  Instead of improving access to insurance, these proposals could have 
the exact opposite effect. By exempting multiple employer welfare 
arrangements--known as MEWAs--from a range of state insurance 
regulation, the Republican bill will make it more difficult for states 
to fund high-risk pools and other programs to keep health insurance 
affordable. The National Association of Insurance Commissioners and the 
National Conference of State Legislatures are concerned that these GOP 
provisions could ``undermine the recent efforts undertaken by states to 
ensure their small business communities have access to affordable 
health insurance.''
  Take a look at this little boy, born with a cleft lip. In many 
states, HMOs are required to pay for coverage to give this boy a normal 
face.
  Mr. Speaker, I would guess that many of my Republican colleagues 
would be surprised to learn that because a cleft lip is considered a 
``condition'' rather than a ``disease,'' plans serving HealthMarts in 
the GOP bill would not be required to cover needed treatments for this 
deformity!
  This is not just my interpretation of the Republican bill. The 
Commerce Committee staff member who helped draft the provision 
confirmed to me that HealthMarts would not be bound by state laws 
requiring coverage of cleft lips and similar birth defects. If the 
Republican Task Force bill becomes law, I think it will be very 
difficult for Members to explain to the parents of a child like this 
why Congress exempted HealthMarts from this state law protection.
  Second, the Republican bill does not contain protections for doctors 
and nurses who serve as advocates for their patients. Both bills ban 
``gag rules'' that some health plans have used to limit discussions 
between patients and their health care providers, but the Patients' 
Bill of Rights recognizes that doctors and nurses need to be advocates 
at other times too.
  It prevents health plans from taking action against them for speaking 
up at internal and external reviews or for alerting public health 
authorities to safety concerns. These are protections not present in 
the Republican Task Force bill.
  A third key difference between the Republican Task Force bill and the 
bi-partisan Patients' Bill of Rights related to the way in which they 
deal with drug formularies. For reasons which may have more to do with 
financial discounts than quality medical care, many health plans have 
limited their coverage of prescription drugs to those on a 
``formulary,'' For many conditions and diseases, patients can be given 
any number of formulations of a drug--whether brand names or generic.
  That is, however, not always the case. Often, a patient may have a 
need for a particular formulation of a drug.That is especially true of 
narrow therapeutic index drugs, for which there is a very narrow window 
between efficacy and toxicity. Switching patients from brand name to 
generic drugs or vice-versa can have serious health consequences.
  The Patients' Bill of Rights recognizes this by ensuring that 
physicians and pharmacists have input in the creation of a plan's 
formulary. Moreover, the bill ensures that there is a way for patients 
to get a drug that is not on the formulary if their physician 
determines it is medically indicated.
  By contrast, the Republican Task Force bill merely provides enrollees 
with information of the extent to which a drug formulary is used and a 
description of how the formularly is developed.
  More specific information as to whether a particular drug biological 
is on the formulary is available only to those who ask.
  A fourth key difference is that the Patients' Bill of Rights 
guarantees access to clinical trials, something that the Republican 
Task Force bill does not do. For patients with some diseases, the only 
hope for a cure lies in cutting-edge clinical trials.
  The Patient's Bill of Rights would allow individuals with serious or 
life-threatening illnesses for which no standard treatment is effective 
to participate in clinical trials if participation offers a meaningful 
potential for significant benefit.
  This does not require the health plan to pay all of the costs of the 
clinical trials. In fact, all that the Patients' Bill of Rights, the 
bill I support, obligates a plan to do is cover the routine costs they 
would otherwise be required to pay. They are not forced to assume any 
of the added costs of participation in the clinical trial.
  The Republican Task Force managed care reform bill, by contrast, 
contain no similar protections. That can be a major difference for 
someone with life-threatening illness who would rather use his strength 
to battle his disease, not to battle with the insurance company

[[Page E1623]]

for coverage of the clinical trial that could save his life.
  A fifth important distinction between the competing proposals is that 
the Republican Task Force proposal does not provide for ongoing access 
to specialists for chronic conditions. Many chronic conditions, such as 
Multiple Sclerosis or arthritis, require routine care from specially-
trained physicians, like neurologists or rheumatologists.
  It is one thing to ask an enrollee to get a referral for an isolated 
visit to a specialist. But those with chronic conditions need a 
standing referral to those specialists or to be able to designate the 
specialist as their primary care provider. This protection is not in 
the Republican Task Force bill.
  A sixth distinction between the two is that the Patients' Bill of 
Rights does more to ensure that individuals are able to see the doctor 
of their own choosing. Both bills have a point-of-service provision 
that allows individuals to see health care providers not in their plans 
closed panel, but the Republican Task Force bill contains a loophole 
that renders the protection a hollow one for millions of Americans.
  Under the Republican bill, a health plan would not have to offer 
employees a point-of-service option if they could demonstrate that the 
separate coverage would be more than 1 percent higher than the premium 
for the closed panel plan. And this needs to be only a theoretical 
increase. The bill allows health plans to provide an only actuarial 
speculation that the costs would increase and they are relieved of 
having to offer employees this benefit.
  Perhaps more amazing is the fact that this exemption is triggered 
even if the employees selecting the point of service option would pay 
all of the costs of the improved coverage themselves. Under the 
Republican Task Force bill, employees who are willing to pay the entire 
added cost for the ability to obtain out-of-network care can be denied 
access to this benefit if the employer is able to speculate that the 
costs might be higher.
  That is the ultimate in paternalism. The bi-partisan bill I support, 
the Patients' Bill of Rights, lets the employees decide for themselves 
if they want to purchase this enhanced coverage.
  A seventh key difference between the two bills is that the Patients' 
Bill of Rights ensures that health plans not place inappropriate 
financial incentives on providers to withhold care. Medicare 
regulations very explicitly limit the kind of financial arrangements 
that health plans can have with providers protecting seniors from 
providers who may get a financial windfall by delivering less care.

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