EFFORTS Emphysema Foundation For Our Right To Survive
http://www.emphysema.net
Vol. 1, No.
5
August, 2000
As our speakers told us at the First Rally, we should continue to correspond with our elected representatives, both on a state and national level; continue to write to our local and state newspapers to keep educating readers as to just what lung disease is and means, to patients, their families and the economy; continue to distribute flyers and brochures and take every advantage to speak to those who will listen, whether individually or in groups, such as clubs and support groups, and keep supporting one another.
Effective August 1, 2000, the latest round of
catastrophic action to the Medicare system began with the implementation of
"prospective payment" for outpatient respiratory care services. Now billed
under the coding of "APCs" - Ambulatory Patient Classifications - services formerly assigned their own individual HCPCS Codes - HCFA Common
Procedure Coding System - with their own individually assigned
reimbursement amounts - have been lumped under a "few" APCs and given a
new reimbursement amount - in a large number of cases at, an incredibly
reduced amount. In several instances, former HCPCS codes were "zeroed out",
meaning that they simply were deleted as no longer payable. The premise is
that those codes zeroed out were considered to be part of the "standard of
care" and should not be separated for billing purposes, but rather covered
under existing umbrella service codes for more general categories, or like
for "nursing care," which is never specifically reimbursed.
Such is what happened to the HCPCS code 94760 and 94761 - the codes MANY
of us doing pulmonary rehab. have been instructed by our Medicare Fiscal
Intermediaries to use to bill for exercise in our programs. Essentially, we
have lost the "bread and butter" billing mechanism for our program services.
This has reduced our reimbursement to about 10 - 15 % of what we were
getting. While there are other codes we could use, they would result in
audits and activity like that which would result in our cost to deliver and
collect for these services being greater than the potential reimbursement.
Under APCs, HCFA has designated a flat price (adjustable for location and
market) AND, in a new move, has designate the "dollar-amount" co-pay to be
paid by the beneficiary. This amount is NO LONGER based upon the 80/20 plan
you have come to know. Indeed, many of the co-pays will be 40, even 60 % of
the total allowable for the service. While this may sound bad and send up
your red flags, don't fret just yet. In many instances, HCFA has so reduced
the allowable, that your 60 % co-pay may STILL be LESS than your former 20 %
co-pay. Another unknown in this process is how insurance companies who
carry supplemental policy benefits for Medicare recipients will handle the
new co-pay process.
HCFA (Health Care Finance Administration - the bureaucratic body that
directs the Medicare program) acknowledges that there are difficulties and
short-comings in the new system and has initiated it with tracking to
ascertain impact - financial and service quality - with the intent
to adjust it as indicated. It will take at least six months to determine
what needs adjustment and how much, though most of us who are providing the
services know NOW what the shortfall will be.
Some programs will close. Many will cut back on services or require a
higher payment/co-payment from participants. Some (like mine) will continue
to deliver services as before, billing the patient only the (increased
percent) co-pay designated under the new APCs and evaluate the impact and
HCFA activity to adjust the system as data dictate the need to. We will
re-evaluate our position in six months and determine whether to continue
offering pulmonary rehabilitation services or cease. I am sure MANY other
will do the same.
On a brighter note, amidst all this, one of the Fiscal Intermediaries has
published a draft proposal for reimbursement of Outpatient Pulmonary
Rehabilitation services on which I have just finished submitting comments
for the refinement process. As well, HCFA continues to consider provisions
of a national policy for pulmonary rehabilitation coverage - which,
under the APC system, would likely have it's own APC code and reimbursement
amount - which is why so many of us will continue to provide services,
as we anticipate being able to collect for them - sooner or later! We
are optimistic that the outcome will be a bonafide recognition and payment
policy for pulmonary rehabilitation.
Before closing, I want to offer corrective information to a few
misconceptions in some other related posts on this subject. Medicare does
NOT care what the "units" that deliver pulmonary rehabilitation services are
"called", nor "where" they are located - 'in' or 'out' of the hospital.
You CAN receive Medicare-reimbursed pulmonary rehabilitation services in a
Physical Therapy/Occupational Therapy clinic as long as they are approved to
received Medicare reimbursement (are Medicare providers). Medicare DOES
care if the services are billed and coded as "pulmonary rehabilitation" - which HCFA/Medicare does NOT recognize as a legitimate "group" of specific
services. They require each service selected and delivered to be able to
"stand on its own" with regard to medical necessity, regardless of whether
or not it is delivered under any 'umbrella' of "pulmonary rehabilitation".
Medicare does NOT pay for "INpatient" pulmonary rehabilitation as a specific
service, either, however, pulmonary rehabilitation services may be delivered
as part of inpatient care for those qualifying for inpatient stays under the
DRG for physical deconditioning. Even then the services are not
specifically reimbursable separately for the lump-payment form the DRG and
indeed, dilute the revenue for the DRG payment.
While one or two hospitals may seem to be billing only what patients care
to, or are able to pay, it is NOT a widespread phenomenon from the
information I am getting. In other cases - and what is my prevailing
observation - most staffs have no idea what the actual cost of or
billing for their programs really is. Most of the time when I query
other program directors/staff they tell me their facts and figures and when
I ask questions regarding verification of the numbers they give me, most
have no way of knowing as they never handle or see the actual billing
information because that is handled by their billing departments and not
reported back to them. Indeed, in some cases, when I have directed them in
gathering the information to answer my questions, they are shocked and
surprised to find that ACTUAL costs and charges are much different than what
they thought. AND, in many cases, the charges are higher and the
reimbursement/revenue is lower than what they thought!
Regards, Mark
I would like to explain one of our policies that might sound a little as if it conflicts with what we are doing. There are several lists on the internet that are very vocal against smoking, and for absolutely smoke-free establishments. I respect these organizations and certainly they are doing a good job, and can become quite militant and aggressive.
Most EFFORTS members are former smokers, some still smoking even, and some have never smoked. However, our argument is NOT with folks that smoke. In fact we do not have an argument with anyone, we simply are searching for more effective treatment of emphysema and related lung diseases. After all, we can attest to the damage of smoking, but we are not in a very good position to now holler that no one else can smoke, as we were quite vocal about our own right to smoke in a lot of instances. So ours is not a smokers' rights issue.
So please, if you wish to join in one of the organizations, do so, but please do not advertise them on our list. They are easily found on search engines by just selected "smoking" or "smoke-free."
We want to help folks not to smoke and to help them to quit smoking through education and whatever help we can provide, but we do not want to become a master list of email addresses where one click makes you a member with daily messages. I am receiving these, although I have been very vocal about not wanting their mail.So please, use our list as you will for matters within our guidelines as shown in http://www.emphysema.net/mposition.html on our main page http://www.emphysema.net/bindex.html and under Position Statement.
We do not accept money for a good reason. We don't need it. As long as we keep letting folks know what is going on, we are getting our point across. By NOT taking money, we then become a force to reckon with as we are not influenced by money, but by deed. What sets us apart from other "non-profits" is that we are strictly volunteers and are self supporting. This list costs members not a single dime and while many have spent from their own pockets, it has been for the good of EFFORTS. We do not have to account for money if we are not taking it in, and we have had many, many folks of high reputation back us because of this fact. So be PROUD that we are doing something for ourselves and our disease. Money will not make us any stronger, because you can't "buy" what we are doing. We need to contact our representatives, the ALA and other organizations to determine what we must do to be recognized. For those that have recently joined us, we have come a long long way in the last two years. In fact, I just completed updating our links pages, and am proud to show how many reputable associations have recognized EFFORTS as an important entity. Please see http://www.emphysema.net/oil.html
In addition to our letter writing campaign now unfolding, I am pleased to announce the receipt of another letter as shown on http://www.emphysema.net/lenfant.html. We have now been recognized as being affiliated with the NHLBI. Shortly, I will be announcing who will be attending as a representative of
EFFORTS.I have also been recently contacted by Mr. John Leamon of the American Institute for Life Threatening Disease who is interested in doing an article on EFFORTS in their Respiratory News and Views Publications. This is the organization that Tom Whitman is now associated with and is preparing a COPD specific consortium of their organization. We are participating as a co-sponsor.
We also have been discussing liaisons with the American Association for Respiratory Care and will be announcing more on this shortly.
The Center for Disease Control has recognized that they have not been properly categorizing COPD in their statistics and have asked us to work with them in correcting some of this data in order to properly track the mortality and morbidity rates to better classify our
disease.Folks, what you read on our daily messages does not reflect what is going on within our list, and "behind the scenes". This is being accomplished
*during* the complaints of too much mail, etc.. We need your help to continue our EFFORTS; we are active and invite any and all to participate. One of the urgent needs is to fulfill our obligations with our Chapter Directors, and to volunteer where your state is not represented. These folks are part of what is going on. If they send you a message to ask for your help, PLEASE do not ignore them. If you do not want to participate, please be considerate enough to at least tell them and we will not bother you again. If you cannot or do not desire to participate in our projects, this is no problem and you are welcome to stay with us in a support capacity. Just please let the Chapter Directors know.I will try to update you as things develop. Thank you. Gary Bain, President and Founder.
I have been experimenting with old cannulas trying to make a good coil. I
tightly wrap the length to be coiled around a broom handle. Heat the coil with a hair dryer being careful not to heat so much as to collapse the
tubing. Let the coil cool then remove from handle. If the result doesn't meet satisfaction, try again either by wrapping the coils tighter and closer
together or applying heat for a longer period. If you want a larger diameter coil, use a soup can as a form or a coffee can
for a larger diameter yet.
Carroll, AZ
To avoid getting SOB in the shower, I don't run the water real hot where it gets
steamy in there. Also, I take a .025mg Xanax a 1/2 hour before I take my shower
- holds off the anxiety attacks. I also have a shower stool in there I can sit on and a Terry Cloth bathrobe
to slip on when done. This saves all that work of drying with a towel.
Gary, FL
One of the things I find helpful in the shower is liquid soap. Dove has a
nice large size and it is so quick to lather up with it. Also, I have a shower chair but for now use it to prop my leg on to wash and to hold on to
to regain my breath. I think I get SOB just thinking about a shower. Peggy,
VA
I always shower at night. The relaxation out weight any side effects and helps me sleep better. I also
get up a lot of the 'junk' that would be there in the morning. Tom,
MD
I started to whistle somewhat by accident. My entire family is tone deaf, so I don't even try to whistle a tune. However, I found out that when I was
very sob and thought I was slipping towards a full blown panic attack, if I whistled on exhalation it was helpful. Sometimes I think the sound of the
whistle is somehow reassuring me that there is indeed air being exhaled. I use whistling only when having a difficult time, but use it I do!! Try it
next time you find yourself sure you cannot get any air out, you might surprise yourself!
Sandy, MI
I always have whistled even before I had Emphysema so pursed lip breathing came easy for me. I
unconscioiusly do it all the time ---sometimes a good tune sometimes nothing. at a better breathers meeting recently my wife asked the RRT who was
lecturing on weather effects on breathing how was the best way to purse lip breathe---She answered "put your lips together and blow" to which my wife
said "so that's why Jim whistles all the time". I don't know how much it helps--I still get sob at times when moving around
but it sure helps me to avoid panic attacks. Jim,
IL
When I was at the dentist last week and he was doing procedure, I asked him if it would produce 'dust' or 'particles' that might get up my nose. He hadn't
thought of that, either, but said that could happen and he would take measures to see that I was
protected. He is a very caring individual, for which I am thankful. He understands that whatever he
does is a stressor to me and shows concern for the whole me, not just the mouth.
Joan, NJ
Used dryer sheets come in handy for lots of stuff, from taking dust off TV screens, to removing pet hair from furniture.
I use them for lots of things, too & they're great in closets. hanging on a
hanger or placed on a shelf! Get rid of odors :-) (I don't buy the flowery smelly ones - too strong).
Mimi - WI
Throw a couple of Menthol-Lyptus cough drops in your tea while you are drinking it. The vapor is very comforting to your nose and throat.
Joan, NJ
COPD-FRIENDLY CLEANING SOLUTIONS
AIR FRESHENERS
1) Place a few slices of lemon, orange or grapefruit in a pot of water and let simmer for an hour or more for a nice citrus scent.
2) Soak cotton balls with vanilla or fruit extracts and put in a perforated jar or basket.
3) Soak a cinnamon stick with vanilla and place in dish or use as a car freshener.
ALL PURPOSE LIQUID CLEANER
Cuts grease and cleans countertops, baseboards, refrigerators and other appliances. Combine in a plastic bottle...one teaspoon borax, one-half
teaspoon washing soda (a stronger form of baking soda available at supermarkets), two tablespoons white vinegar, or lemon juice, one-half
teaspoon Murphy's Oil Soap and two cups of hot water.
FLOOR CLEANER
Use on wood, tile or linoleum for a long lasting shine. Mix one-eighth cup Murphy's Oil Soap, one-half cup white vinegar and two gallons
warm water in a plastic pail.
OVEN CLEANER
Sprinkle water on the grimy spots, then cover with baking soda. Repeat the process, and let sit overnight. The grease and grime will wipe off
clean the next day. Use liquid soap and water to sponge away any residue.
OVERNIGHT TOILET-BOWL CLEANER
Pour one cup borax into the toilet bowl. Let sit overnight. Flush in the morning. Stains and rings will lift away.
NON ABRASIVE CLEANER
Scours sinks and bathtubs, and leaves no gritty residue. Combine one-quarter cup baking soda and enough Murphy's Oil Soap to make a
creamy paste.
WINDOW CLEANER
In a plastic spray bottle, combine one-half teaspoon Murphy's Oil Soap, three tablespoons white vinegar, and two cups warm water.
WOOD-FURNITURE DUSTING AND CLEANING CLOTH
Mix one-half teaspoon olive oil and one-quarter cup white vinegar or lemon juice in a bowl. Apply to cotton cloth. Reapply as needed.
MINERAL BLOCKED SHOWER HEAD
Half fill a sandwich bag with white vinegar and place over the shower head, submerging it in the vinegar and securing with a rubber band and
let soak overnight.
REMOVING WHITE RINGS FROM WOOD FURNITURE
Apply thin layer of mayonnaise and cover with plastic wrap. Allow to sit for an hour. Remove the wrap and work the mayonnaise into the
finish.
SPECIAL DUST CLOTH
One of the best methods of dusting is to use a "tack cloth" - found in the paint department at a cost of 50 cents. Although very tacky to the
touch, leaves no film or residue and doesn't "push" the dust around. Just refold the cheesecloth and store it in a plastic bag between uses, it
will last a very long time.
Joyce, CO
Every Breath You Take
Preventing and Treating
EMPHYSEMA by Carol Lewis
We begin life with a breath, and the process continues automatically without a thought. It's only when we can't take a deep breath or can't catch our breath at all without effort, that we become aware of how precious easy breathing really is.
While it is true that the damage done to our lungs is not reversible, the disease is manageable, says John S. Saia, M.D., a pulmonary specialist with the Rockville Internal Medicine Group in Maryland. Saia adds that state-of-the-art medical advances can offer relief from many of the troubling symptoms of emphysema, and help patients breathe easier.Emphysema is one of a group of lung diseases referred to as chronic obstructive pulmonary disease (COPD) that can interfere with normal breathing. Other diseases that come under COPD include asthma and chronic bronchitis. According to the American Lung Association (ALA), nearly 16 million Americans are estimated to suffer from some form of COPD, and COPD is the fourth- ranking cause of death just behind heart ailments, cancers, and stroke.
ALA estimates that 2 million Americans had emphysema in 1998, and cigarette smoking was the primary cause. Exposure to air pollution and irritating fumes and dusts on the job are also thought to be contributing factors of emphysema.
The predominant symptom of emphysema is shortness of breath or the feeling of not being able to get enough air. A person may initially visit the doctor because he or she has begun to feel short of breath during activity, but as
the disease progresses, this symptom may be present all the time, even while sitting quietly. Coughing, wheezing, and chronic mucus production are other common symptoms.A diagnosis, however, cannot be based on these symptoms alone, Saia says. A careful history, he explains, focusing on the number and duration of these symptoms, as well as smoking and occupational histories, is basic to diagnosing the disease. The physician will thoroughly examine the chest, observe breathing patterns, and monitor how hard the person is working to breathe. A thorough exam will also include noting the degree of over-inflation of the lungs, listening to the chest with a stethoscope to hear the airflow in and out of the lungs, and listening to heart sounds to determine its rate and rhythm and any signs of heart strain that may accompany advanced stages of emphysema. In addition, routine lung function tests can determine several haracteristics and capabilities of the lungs. The following tests can identify various stages of emphysema:
Spirometry: Through a tube connected to a machine that records airflow and capacity, the patient takes a deep breath and blows it out as quickly as possible. Measuring the amount of air that can be forced out in one second and the total amount of air that can be exhaled is the best way to determine the amount of airways obstruction.
Arterial Blood Gas (ABG): An ABG is done by analyzing blood from an artery for amounts of carbon dioxide and oxygen. This test is often used to assess more advanced stages of emphysema and to determine whether or not a person needs extra oxygen.
Pulse Oximetry: A special light, clipped onto the finger or earlobe, can indirectly measure the amount of oxygen in the blood.
X-rays: X-rays are not often helpful in early-stage diagnosis of emphysema, but in moderate to severe cases, a reasonably accurate diagnosis can be made with the plain chest x-ray and computerized axial tomography (CAT) scanning. Some of the more common appearances on the chest x-ray include flattened diaphragms, loss of blood vessel markings, and the appearance of a reduced size of the heart.
These and other test results are then compared to values considered healthy for various age groups, heights, weights, genders, and races.
There are a number of treatments that can help patients with emphysema, but the most important step is to stop smoking. Stopping smoking when the airflow obstruction is mild or moderate slows the development of disabling shortness of breath. However, "stopping smoking at any point in the disease process," Saia insists, "provides some benefit. " People with emphysema should also try to avoid exposure to other airborne irritants.
Treatments include: Bronchodilator medicines: This class of medication works by relaxing the
muscles around the airways. They are typically indicated for the relief of bronchospasm in patients with reversible obstructive airways disease. More commonly used to treat asthma, they may be prescribed for emphysema patients if there is a tendency toward airway constriction or tightening. Some of the more common bronchodilator medicines include: albuterol, terbutaline, ipratropium bromide, and theophylline. Inhaled medicines, which go directly into the lungs and have less exposure to other parts of the body, are often tried first because they usually begin working in less than five minutes with a lower incidence of side effects. "Valuable additions to bronchodilator therapy are blood tests used to monitor pharmacological agents such as theophylline," adds Steven Gutman, M.D., director of the division of clinical laboratory devices in the Food and Drug Administration's Center for Devices and Radiological Health. "Although tests for measuring theophylline have been available for decades," he says, "there continue to be refinements in this testing which make them more accurate and accessible. "Anti-inflammatories (corticosteroids): Since emphysema may be associated with inflammation, doctors may prescribe a corticosteroid to soothe and ultimately heal the delicate lining layer of the air passageways, making them more resistant to obstruction. Inhaled steroids do not carry an
FDA-approved indication for COPD but are used off-label by many clinicians. The type of steroid contained in these preparations is not the type that builds muscles. Long-term use of oral corticosteroids is commonly associated with a variety of dose-dependent side effects, such as osteoporosis (in both men and women), weight gain and fat redistribution, hypertension, loss of lean body mass, and high blood sugar. Commonly used corticosteroids include the oral preparation prednisone and several inhaled corticosteroids.Oxygen therapy: Supplemental oxygen can benefit the patient whose lung function is severely impaired and cannot absorb enough oxygen from the air. Long-term oxygen therapy prolongs life in patients who have low blood oxygen levels (hypoxemia). This therapy reduces the excess red blood cells, which helps improve mental functioning and heart failure. It may also improve shortness of breath during exercise.
Lung reduction surgery: Emphysema sufferers may find relief from their symptoms with this surgical procedure. It often eliminates the need for oxygen and significantly enhances breathing function. This technique, which is a minimally invasive procedure, requires two or three small incisions made in the chest and a tiny camera inserted through one of the incisions to view the lung. Through another incision, a special stapling device is inserted to cut portions of the lung so that the healthy lung tissue has more room to expand. Prospective patients need to undergo careful testing prior to consideration of this surgery.
Transplant surgery: A lung transplant is a highly invasive, complex procedure that carries substantial risk. Because of known complications of any organ transplant surgery, this option is only viable in a very small, select group of patients.
Exercise programs can be carried out to improve a person's independence and quality of life, and decrease the frequency and length of hospital stays, even though lung function doesn't improve. Gains in conditioning, though, Saia cautions, are quickly lost if a person stops exercising.
The key to managing emphysema, Saia insists, is to identify the disease as early as possible. Methods continue to be developed to help physicians find the earliest signs so that preventive and therapeutic measures can be instituted. But with current treatments, even those who are severely afflicted with emphysema and are homebound, can be made more comfortable and can experience a higher quality of life.
Carol Lewis is a staff writer for FDA Consumer.
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