There have been many technical improvements over recent years: test equipment is less expensive and more accurate, allowing earlier and more positive diagnoses; new drugs block certain allergic reactions or triggering factors, and others are more effective in reducing the severity of respiratory symptoms; surgical techniques (including lung transplantation) have been developed for specific conditions, and; pulmonary rehabilitation (and wellness) programs have been developed to help patients regain physical abilities they thought were lost forever. Hundreds of support groups have been formed to facilitate the patients’ efforts to take control of their treatments, regain their self respect, and enjoy longer, more productive lives.

For other life-threatening diseases, it is "standard practice" for Primary Care Physicians to routinely and regularly prescribe x-rays, mammogram's, electrocardiograms, pap smears, and blood sugar tests on all their "at-risk" patients, without waiting for specific symptoms to surface. And it is "standard practice" to refer the patient to a specialist at the first hint of cancer, heart disease, or diabetes.

Unfortunately, it is also accepted "standard practice" for many PCPs to wait until the patient complains of extreme breathlessness, or fainting spells, or a cough that just won't go away, to diagnosis an obstructive pulmonary disease, and the "treatment scheme" offered is usually limited to a couple of prescriptions and advice to go home and "take it easy" (probably the worst possible "treatment").

An appropriate "Standard of Practice" would remedy the failures and shortcomings I've listed here, and Primary Care Physicians would routinely perform spirometry exams, every five years, on every patient over thirty, and search carefully for abnormal degradation of function and, with the Pulmonologist, encourage their patient to work aggressively to lessen the progress of their disease. It would also encourage frequent life-long therapeutic sessions and emotional support.

Is it a coincidence that "my" Standards of Practice are so similar to those which were adopted and published by the American Association of Chest Physicians in 1974?

Why, twenty-five years later, can so many PCPs and Pulmonologists fall so short of these standards and still be allowed to practice?

It took a spate of successful malpractice lawsuits to motivate doctors toward early detection and treatment of cancer and heart disease. What will it take to change the standard for diagnosing and treating pulmonary diseases?

Write Your Congressman/woman

Bill Horden

San Antonio, TX 78257
 

December 3, 1998

Hon. Henry Bonilla
U.S. Congress
2358 Rayburn HOB
Washington, DC 20515-6024

RE: NETT

Dear Mr. Bonilla:

I am providing, below, a copy of an e-mail I posted yesterday to a mail list reaching 600 fellow COPD patients. I am mailing a copy to each of your fellow sub-committee members.

COPD is the fourth leading cause of death, and the third-leading cause of disability, in the U.S. The cost (private and public moneys) is staggering, both for treatment and in lost productivity. There are numerous treatments that have been proven to be very cost effective in arresting the course of this illness (one being lung volume reduction surgery), as well as contributing significantly to the quality of the patients’ lives, yet Medicare (the pace-setter in reimbursement policy) refuses to recognize/authorize them. Your committee needs to be better informed in these matters.

Respectfully,

Bill Horden

I wrote my representative in congress, asking that he consider requiring Medicare and HFCA to change the NETT program. Following is his response:

Dear Mr. Horden:

Thank you for taking the time to contact me regarding the Health Care Financing Administration's (HCFA) rules for the conduct of the National Emphysema Treatment Trial (NETT). I appreciate having the benefit of your views on this matter.

As you know, HCFA and the Heart, Lung, and Blood Institute (NHLBI) are collaborating on a multi-center, randomized clinical study evaluating the effectiveness of lung volume reduction surgery. HCFA will cover this surgery in those limited circumstances when it is provided to a Medicare beneficiary under the protocols established for the study. The criteria for coverage selection was determined by HFCA and the NHLBI.

As you may know, I am a member of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education. The committee funds the 24 institutes, centers, and divisions that comprise the National Institutes of Health (NIH), the premier medical research institution in the world, and the Center for Disease Control (CDC).

I am aware that Chronic Obstructive Pulmonary Disorder affects millions of Americans and is a leading cause of death. I believe that basic research is of great benefit and can help us better understand this debilitating disorder. If we are to continue as the world leader in technological advancement, America must continue to support biomedical research. This year, Congress provided $15.6 billion for the NIH, a necessary increase of almost $2 billion over fiscal year 1998, and $2.6 billion for the CDC, an increase of $226 million. Specifically, the NHLBI received a $211 million increase over fiscal year 1998. The federal investment in research to end disease and suffering must remain a national priority. I will continue to work hard to ensure that funding for the NHLBI reflects our strong commitment to research.

Thanks again for your views. Your insights help me to better represent you in Congress. Please continue to feel free to inform me of your thoughts on issues of concern.

Sincerely,

Henry Bonilla
Member of Congress

My response will read as follows:

Subject: Your letter of Nov. 17, 1998, re NETT, HCFA, NHLBI, etc.

Dear Mr. Bonilla:

I wrote to ask your support in revising the HCFA/NHLBI rules established for the NETT program. You, or one of your staff members, responded by reciting data that is available from several other sources, (including my original e-mail) then "promising" to "work hard" to ensure funds for basic research. Your letter conveniently avoided mentioning the fact that HCFA was eighteen months late formulating the NETT program and submitting its report to congress.

The NETT program is NOT "Basic Research;" it is, instead, a politically motivated program that presumes to prove or disprove that which is already demonstrable fact. It is a waste of money and, worse, of human life. LVRS is a proven surgical procedure and, even if not universally "proven", is much more "applied" than "basic" research.

Since you like statistics, you and your committee members should know that, in the month since I first wrote you, 700 people died because they were refused lung volume reduction surgery by Medicare and 1600 more, because their HMO or insurer wouldn't authorize payment "because Medicare doesn't pay."

You should know that, during that period, thousands of patients were admitted to emergency rooms for episodes that could have been avoided by appropriate treatment that was not offered, and tens of thousands of work days and school days were lost by other patients and their caregivers. These problems cost us, collectively, several million dollars a day.

The treatment COPD is not nuclear science. There are many drugs and treatments available, and more appear every year, most developed without government money. Yet you and your committee /subcommittee members, listening to the scientists who would spend this money, rave on about spending more on "basic research." To those with COPD, you might as well be telling a drowning man that you will consider initiating another study of the tides.

I am asking that Congress act to utilize the knowledge in which it's taxpayers (and private patients) have invested heavily; I'm talking about applying that technology you so grandly attribute to our NIH, and; I'm suggesting we finally start treating patients with all the tools we have at hand.

I would be pleased to meet with you, or your staff, at your convenience, to discuss this further and introduce you to the real world many of us live in.

Bill Horden
San Antonio, TX

A Position Paper

by Bill Horden, 7/15/98

I describe myself as "An Impatient Advocate," because I believe too little is being done for patients with chronic pulmonary disease and I think their lives could be greatly improved if only a few things could be accomplished. I’m impatient because I’m convinced many of these objectives could be realized during my lifetime, if only the right people could be better motivated.

I also think of myself as a realist who should accept the facts of life and not try to save the world. There will always be patients who, out of fear, denial, or sloth, will refuse to accept aggressive treatments; there will be others who, despite repeated warnings and clearly failing health, will not (or cannot) quit smoking; there will be doctors who will continue to deliver their "malpractice by omission.

I think we should give serious consideration to these factors:

1. we who have a chronic pulmonary disease (and those who are our caregivers) have a limited reservoir of energy;
2. most of us also have finite financial reserves (if any);
3. the present mood of state and federal governments is to cut expenditures, and;
4. insurance companies, HMOs, etc., are working to cut expenses to the bone.

I am convinced that an effective program of education is the best and fastest way to meet our common needs and objectives. I believe this because I believe:

1. if the general public was aware that our disease is the fourth leading cause of death in the USA, and if they knew that their family doctors could detect its onset with greater certainty than they can detect cancer, a large number would demand such tests and some would opt to quit smoking.
2. if the general public knew how efficacious pulmonary rehabilitation is (for many pulmonary diseases), they would support their creation and maintenance and most pulmonary patients would demand such treatment. (paid by HMOs, Medicare, etc.)
3. because lung transplantation and lung volume reduction surgery are viable options for some pulmonary patients, they should be available to all who qualify. It is certain that surgical techniques will improve, offering ever-better outcomes. Public awareness would help muster the needed support.
4. if the public was made aware of the "pure" research and "applied" research projects now under way they would encourage their continuation, especially if they understood that, like The Muscular Dystrophy Association’s work in genetic engineering and the work of others into cloning, such "pure" research often leads to improved treatment of patients with different diseases, but related causes.

In Conclusion

Like many things in life, fighting chronic pulmonary disease is an overwhelming job. When one looks at it in its entirety, it appears insurmountable, and one is prompted to ask, "How can I, one person, alone, have an effect on this enormous problem?"

I think the answer is, "By making every move count," and that means, "By using your resources wisely."

I know, for certain; that I cannot afford to waste one iota of my time, energy, or money tilting at windmills, wishing to win the lottery, or complaining about my lot in life.

Peak Flow Meters

I'd like to address the failure of our "primary care" doctors to revise their "standards of practice" to include a simple breathing test with every general/annual physical exam for those over 40, and for all who complain of SOB. That "simple" exam involves using a Peak Flow Meter, a device than cost next to nothing and could even be read by the patient, not a $300 specialist. If the PFM shows a potential problem, it can be readily checked with a spirometer (which have become so inexpensive that every primary care physician should have in his office.)

By comparing PFM readings, year to year (or week-to-week for those with active symptoms) "even" a patient can detect "COPD" (including asthma) at an early stage; at a time when breathing function is still good enough that the patient's activity level is not severly limited, and the patient's life is not significantly shortened.

We read or see, on television, frequent public service announcements about the virtue of early detection of breast, prostate, and colon cancer; of blood pressure and stroke risks, and; avoiding prenatal exposure to anything harmful.

If there is any really practical way to quickly and effectively reduce the spread of pulmonary diseases, early detection must be part of the program. And that cheap little Peak Flow Monitor is a key to its success.

Is NETT a Recipe for Failure?

When the bureaucrats and the scientists in the NHLBI (the National Heart, Lung, and Blood Institute) and the HCFA (the agency that funds Medicare) got together with NIH (the National Institutes of Health) to design the NETT (National Emphysema Treatment Trials), they decided that they should be "randomized," to assure their validity.

"Randomization," as applied to the NETT program, means that, after a group of patients complete the screening, testing, and waiting process, it will be divided, randomly (like they draw straws) into two groups: Group 1 will receive the long-awaited LVRS (Lung Volume Reduction Surgery) and Group 2 will be sent home to continue living as they had before the testing, screening, etc.

After five or six or seven years, Medicare (or HCFA) will test each member of Group 1 and each member of Group 2, compare the two, and, thereby, "objectively" measure the efficacy of LVRS. In other words, THAT was THE PLAN: to get hundreds of patients to agree to undergo extensive screening (including a Pulmonary Rehab Program, often traveling hundreds of miles to participate) and then flip a coin to see who won and who lost.

Well, a funny thing has happened. Many of those patients who were "randomized out" have opted to break the agreement with Medicare and have had LVRS performed at different hospitals, paying for it themselves, or getting partial reimbursement from other insurance plans or HMOs. This results in Medicare having a lot more patients in Group 1 than in Group 2. And, it means that, if they are to maintain their statistical purity, they have to recruit a lot more people for Group 2, so future coin-tosses aren't going to be fifty-fifty. Most likely they will be ten-to-one.

I doubt that it takes a nuclear physicist to comprehend the fact that the longer they pursue this policy, the deeper will be the hole. If it weren't for the amount of money these folks are wasting, and the negative effect their dumb ideas have on our lives, the situation would be laughable.