Place: NIH, Bethesda, Maryland
Speaker:  Steve Lamb - Assistant VP for Public Policy, National Committee for Quality Assurance (NCQA)
The NCQA is an independent, non profit organization. It evaluates health plans and reports the information back to the public about how well those plans are doing.

Steve started by saying that the kinds of things NCQA looks at, while very important, are not at the level that may be most important to people with rare health conditions such as Marfans. That is because the managed care industry is new.

Steve paraphrased Ian Morrison who heads up "The Institute for the Future" who said that for someone with a chronic health condition, the best thing you can do is find out which doctors in the area you want to treat you and then find out which health plans they participate in and join those plans. Steve said that the reality of where we are today is that this is the most logical approach to selecting a health plan for those with chronic conditions despite the kind of work that NCQA does in rating the plans.

Steve gave some history of employer sponsored health insurance and the beginnings of HMOs when a Federal law was passed during the Nixon administration to encourage the development of HMOs so that they could assist in maintaining health care costs.  The group or staff model HMO (Kaiser model) was the most common form at that time.   The reluctance of employees to use staff model HMOs limited the growth of HMOs.  They wanted the freedom to choose doctors.  As a result, the industry started offering the Individual Practice Association (IPA) model HMO.  It is the HMO without walls, as we find most HMOs are today.  They employ doctors on contract who might work for 8 to 10 different HMOs rather than just one, as in the staff model. HMOs still didn't become generally popular until after Point of Service (POS) was introduced by the industry.  That combines HMO style coverage with indemnity style coverage for those who choose to go to a doctor who is not on the HMO panel. This new flexible approach leaves you with the freedom to go to top specialists when you feel it is necessary. The option of going off list requires that you pay more out of pocket for those occasions that you choose not to use the HMO provider list.

NCQA was founded in 1980 as a result of concerns by benefit managers and unions that employees who were moving into managed health plans move into plans that were well run. NCQA exists today for three reasons:  First, to provide information on managed care quality to the marketplace, second to encourage managed care accountability and third, to drive quality improvement.

An example of the results is a report card produced by the State of Maryland... done in cooperation with NCQA.  Steve said that Maryland is a pretty progressive State, being among the first States to produce such a report card for consumers. Others include N.J., Utah, Florida, and California.  A study determined that although most consumers didn't read the report cards, the report cards had a tremendous effect on HMO performance - through, what Steve called, "the shaming effect." No HMO wants to be  shamed in a public report showing that they performed poorly.

Fifty five percent of people receiving health insurance though an employer do not have a choice of more than one health plan and it is clear that most consumers don't use report cards to choose health plans.  But the studies by NCQA do have a positive impact on the industry in pointing out those plans that need improvement.

NCQA is governed by a board of directors representing three constituencies; purchasers, consumers, and health plans.  NCQA has now reviewed about 55% of the HMOs in the country. Although the denial rate has been as high as 14% (not given any form of accreditation after review), the goal is to get health plans to improve.  Unfortunately, the market is currently price driven... the number one criteria that is being used by large and small corporations for which HMOs to contract with is cost.  Quality is climbing in importance because of a backlash from consumers who are "staying away."  NCQA would like to see the market more value driven, balancing cost and quality.  The information available on health plans from NCQA means that employers cannot say that they see all health plans as the same so they can make decisions based only on price. When NCQA fails a health plan, it gives a signal to employees who will hesitate to choose coverage under that plan and the result is that employers must recognize
quality differences.

Getting more information out there is done in two ways.  The first is by sending teams of physicians to health plans to assess how well they are doing. They look at six areas.  The discussion then concentrated on two of the areas.  First quality improvement - is  the plan working toward quality improvement.  This is generally focused on the preventive health services area and it is rare to find a plan addressing special health care needs such as cases of rare diseases. Thus, Mr. Lamb suggests that we must continue to be our own advocates for health care needs.

Second, utilization review - utilization management is the process requiring the doctor to call the health plan for authorization of inpatient stays and surgery.  Utilization management is one of the two ways that health plans can reduce costs dramatically (the other being selective contracting with providers to get doctors and hospitals to lower rates to them by giving them a preferred status in the plan.)  There are a relatively small percentage of people in the country that account for a majority of health care costs.  Health plans reduce their costs significantly by reducing hospital length of stays (LOS).  Some of the more progressive HMOs are looking into case management as a second generation of utilization management. They may assign a nurse to a case to assure that the patient is accessing services at the right time, is aware of all the
resources available, and makes sure that if the patient needs additional care in the home that might be more cost effective, they are getting that option.

There is a misconception in this country that more expensive care always equals better care. Although there are times when the most expensive care is the best care, that is not necessarily true. There are several studies that support the belief that you can spend money on some relatively low tech things and have significant benefit.

Steve then said that speaking personally, rather than as an NCQA representative, people with chronic health conditions have to understand that the HMO may look at such people as individuals who are going to cost them more money.  That can easily lead to situations where you will have to be more aggressive in your dealings with the health plan. There have been documented instances of managed care organizations that have deliberately passed over payment several times because they are assuming that a certain number of people are going to drop out of the system (i.e., the assumption is that when they deny a claim, or someone tells you over the phone that they won't pay for a procedure, there are people who won't take the claim any further.)  In the utilization review process, don't allow this to happen.  These are organizations that are designed, in one respect to improve care, but in another respect, to hold down costs.  As an individual, don't take "no" for an answer a first or a second time.

Some states, including Pennsylvania, California, Florida, Texas, and Arizona, have an external independent review to deal with disputed claims.    In Texas, where there had been a lot of hostility toward managed care, the system has been in place for about a year and they had only 16 cases brought to them. While some may think that this indicates that there is either not as much of a problem as expected or people don't want to bring the cases forward, Steve theorized that to the extent that health plans know that you can appeal to another body, they are far more likely to make the right decisions the first time around.

Even without the legislation setting up appeal boards, you have the right in any state to write to the insurance commissioner or health commissioner. (Note: Maryland's attitude toward Federal Health Plan complaints is that they are precluded from making decisions.)  If you get into a big dispute with a health plan, don't hesitate to send copies to the Insurance Commissioner the State Attorney General, or even NCQA. (There is an Insurance Superintendent in D.C., rather than an insurance commissioner.)  Don't make the cc list so long that it makes you look like a lunatic, though.  You can always contact the insurance commissioner's office by phone while a dispute is going on and, by law, they must look into it.  One third of the insurance commissioners in this country are elected, another third are appointed by the Governor, and the other third are career civil servants. If you live in a state where the insurance commissioner is elected, this will be someone who is very responsive.  Although they may not be able to resolve the dispute, often if the health plan knows you are a person who is going to cc the insurance commission, it can make a difference.  If you are receiving health benefits through your company, you will want to contact the human resources person at the company responsible for the contract with the insurer because those are the people that the health plan sees as the customer. If the benefits manager reports to the HR manager that there are a line of people complaining about their health plan, the impact on employee morale is something they want to know about.

You need to be aware of the fact that if you are in a system like the Federal Employee Health Benefit Plan where you have a wide variety of insurers to choose from, your health plan may be better off if you leave their plan. Therefore if they see you as a person who they are losing money on, they may be giving you a lower level of service because they don't really care if you disenroll.

There followed a brief discussion about some of the problems encountered by those at the meeting. The problems with formulary lists were discussed. (Ed. note, formulary lists are lists of the drugs that are approved by the plan, as opposed to drugs that are not on the list. Plans have said they will pay only for those drugs on the list, often excluding newer, more effective, and more expensive drugs.  OPM required Prudential to pull back its statement to members under the Federal employee plan when it said that there should never be a case in which a plan physician writes a prescription that the plan won't pay for.)  If any plan refuses to divulge their formulary list, you need to take that as a serious breach and cc the plan medical director and NCQA.  NCQA has a standard now that states that there needs to be an exceptions policy. So, if you are having side effects from a drug that is on the formulary list, you should ask about the exceptions policy to get approval for a drug that is not on the formulary list.  There is a trade association for the HMOs, the American Association of Health Plans (AAHP).  AAHP has a code of conduct for members, "putting patients first" which includes the need for an exceptions policy on the drug formulary list. You may refer to this trade association policy if you have a dispute concerning the formulary list... you can ask what the exceptions policy is.

If you are worried about incurring the wrath of the HMO because you are pushing them, Steve said he doesn't believe you need to worry about it   Be as aggressive as you need to be.  And you can always mention in your letters that there is a cost to having a dissatisfied customer since you will tell all your friends what a bad HMO this is.. But while it is often in their best interests to solve the problem, they often operate under the assumption that the individual will just go away.  After a remark from Mary about her experiences fighting her HMO, Steve summarized saying that managed care is a struggle for people with a chronic health condition.  You will have to assume that writing letters is par for the course

Health plans used to develop their own member satisfaction surveys that showed that members were highly satisfied.  NCQA then developed a standardized tool and information from that survey is in the Maryland report card. He described the member satisfaction survey results as very important.  When looking at the survey, you must assume that there are a large number of people who are not using the plan very much.  These people tend to say that they are happy with their health insurance. 82 to 84% is the norm for people who say they are happy with their health insurance.  This figure is driven by those who are light users of the insurance.  What you want to look at is the two ends of the spectrum.  How many people are really very satisfied and how many people are saying "this health plan really stinks."  If you note that a plan has a high
percentage of people who are dissatisfied, these are the people who are actually accessing the system. Even if 85% are saying the plan is OK, you need to compare based on the worst satisfaction level.

Reference was made to HEDIS measures (Health Plan Employer Data and Information System) developed by NCQA.  It is a standardized set of measures, measuring a wide  variety of things such as how many diabetics have received a regular retinal eye exam and the number of physicians who are leaving the health plan per year. If there is a high turnover in doctors it is a danger sign.  But a lack of high turnover may be because the market presence of the health plan is so large that the doctor is forced to contract with them. HEDIS uses 72 measures to tell NCQA as much as possible about a health plan without getting overly detailed.  Try to get the detailed member satisfaction surveys.  This includes such questions as what is the ease of getting referrals.  In 1999, NCQA will begin integrating the results of HEDIS into the accreditation program.  That will mean that NCQA will not only look at the structure and the process, but also the actual results that are being determined.   Right now, the evaluation system is focused on whether the health plan could provide good health care. After integrating HEDIS, the accreditation will give appropriate credit to whether the health plan is actually providing good health care.

You should be aware of whether your state has prompt pay legislation.  Most states require that clean claims (claims that don't require further information) be paid within 30 to 45 days.  If you are waiting 90 days for a payment of a claim and they haven't contacted you for more information, if you are living in a state with a prompt claim law, you may mention to the plan that it is violation of the law.

The question of age of kids before they lose coverage under parent's plans came up. The age is usually set between the employer and the health plan depending on what the employer is willing to pay for.

There was some discussion of the material published by OPM for its open seasons.  That is available through the OPM web site (www.OPM.Gov)
 

Betsy Gafney read questions that were prepared by Gordon (who was not able to attend the meeting).  The questions and answers follow.

Access to Specialists

Q. Do we need information that is not available to the public?  Particularly, how can we find out the policies with regard to referrals when dealing with rare diseases? In cases like Marfans, we have heard of many cases where plans have refused to cover consultation with those who are the experts in the disease.  Often such consultation is critical to determine proper treatment and even to be certain that the original diagnosis is correct.

A. You want to look at the satisfaction survey results. That kind of information is available largely through the HMO itself. You want to ask for the "evidence of coverage" and look at
what kind of specialist referral process they have.  You also want to talk to individuals who
have been in the HMO if you can't get access to the aggregate information. You should also ask to see a member handbook.

Someone asked about his experience with his plan when he asked them to approve his going to Hopkins where they had experts in Marfan syndrome.  The HMO refused and told him to go to a local hospital with a good reputation. Mr. Lamb suggested going along with the plan and if he didn't feel they knew what they were doing at the hospital referred to, he should be prepared to start the appeals process to get access to Hopkins.

Mary told of her experience in getting her HMO to pay for tests that Hopkins said were necessary in diagnosing her.... although they did not approve payment for the initial visit to
Hopkins.

Someone asked about how to choose a plan since most guidance assumes that the person is a light user of the insurance.  The reply was to be sure that if you go with an HMO, you are using one that allows you to go to Hopkins since that is the base of expertise on Marfan Syndrome in the mid-Atlantic..

There was some discussion about BC/BS for people who traveled. The blues generally have agreed to provide care outside the service area at the same rates as covered at home through agreements among the blue cross/blue shield plans. This was described as a relatively recent agreement among the plans. Steve also noted that he thought that Hopkins was part of the preferred provider list for BC/BS of Maryland.

Q. Those with rare diseases are often advised by support groups that they must learn as much as possible about their needs in order to manage their own care.  A couple of months ago someone wrote to an Internet Bulletin Board that her insurance company refused to pay for consultation with doctors at Cornell Medical Center where there were experts on Marfan Syndrome. When I asked if she had fought the decision, she said she had not.  She did not put her request in writing or appeal the decision.  Is it possible that insurance companies are simply waiting for people to fight their decisions before being reasonable about consultation?  Is there a way to track the number of times that HMOs reverse initial decisions when someone fights for their rights. Would that be a measure of an incorrect attitude toward patients that relies on them to protect their interests against their insurance companies.

A: In response to the first part of the question -absolutely. The second part of the answer -a couple of states track it, including New York.  The Federal government tracks it for Medicaid cases. You can ask your HR officer but it might be a little difficult getting it.  The health plans have the information though. A high overturn rate would generally be viewed as bad.  Steve said that information about reversals of initial decisions would be good information to have but there are a lot of reasons that plans would not want to publish such information.  Plans that do publish such information are to be commended.

Q. We often hear that lawyers are hired to get coverage that is originally refused.  Is any tracking done of such cases?  Is there a way that someone can find out in advance of changing to a plan, whether the plan will refuse consultation or be reasonable about care for rare diseases? Is there data on this or must we question sales people who really don't know how the medical decisions are made?

A.  There have been a couple of high profile cases in California.  They generally have to do with bone marrow transplant cases...an end stage treatment for women with breast cancer.  Many HMOs were not covering it on the grounds that it was experimental and investigational.  The "experimental or investigational" terminology is commonly found in the exclusions in the evidence of coverage information.  Lawyers often find that they are able to prove that the plan has, in fact, crossed the line previously and that the decisions are what might be termed "political."  Examples of decisions that favor some people included when a former Mayor of NYC had bypass surgery in a hospital that ordinarily was not part of an HMO's network. The HMO defended the decision based on who the patient was.