One Patient's Positive Perspectives

Posts tagged ‘Rheumatology’

Optimizing Lupus Treatment Strategy # 2 – HMO/PPO or Not ?

Health Insurance Piggy Bank

Health Care Choices

While this draft post was bouncing around in my head and computer over the past couple of weeks, I wondered how it would “go over.”  I wondered if it would hit a common chord with readers.  Unlike many other lupus patients, I am blessed to be able to continue working and therefore have good insurance benefits through my job.

It is my hope to explore some ideas relevant to each of us, whether we have awful or  awesome health insurance.  (This post does not attempt to give strategies for those without health insurance, a topic intended for a later post in this series.)

We exercise choices all through life.  No one is without some control.

We need to make informed choices, so we have the best medical care possible for our lupus.  I don’t like the idea of victim-hood, I like to focus on choices.  Although we may medically be a victim of lupus, we don’t have to mentally live in the what I’ll call the “victim-hood.”

What emotional neighborhood do you live in?  We still can choose for ourselves where we will take up long-term emotional residence.  Victim or victor?  I choose the better address!

It is undeniable that Lupus can get us down and even overwhelm us for a while.  Although we cannot choose whether we have lupus, we can choose whether to stay victims of it.  Understand, I am not saying we can wish lupus away, or even wish ourselves into remission.

Victim-hood is a passive place, from which we can feel we have no power to remove ourselves.  Yet, we still have many choices in life, and many choices about our medical care, despite having lupus.

One of the most important choices a person with lupus, or any chronic illness can make is selecting a doctor.  The doctor we choose exercises great control over our medical treatment, so we should exercise the control available to us in selecting who will have that role.

options

More options than we realize…

Many people may have more options in this decision than they realize.  Even within constraining medical treatment environments, we should exercise all the choice possible to get effective medical care.

What would you be willing to do to get better medical care?  What will you do to prevent yourself from becoming a victim of your lupus?  What might you be willing to give up to get the best medical advice?

One last question to ponder as you choose to continue reading.  What did our parents and grandparent do in this country to pay the doctor before insurance companies took over?  They bartered, brought a chicken, some eggs, a basket of produce from their garden, or maybe offered some other form of cottage industry “payment.”  They paid the doctor for his services, and gave him fair compensation at the going rate — whatever their mid-twentieth century community economy would allow.

Fifty to seventy-five years ago, the full cost to see a doctor was about $5-10 per doctor visit.  In today’s purchasing power, that is nearly the same as $100.  My rheumatologist does not cost me any more than my parents paid to see their doctors in 1960.

Cleaning out my father’s house, I found budget ledgers from the 1950s and 1960s.  My parents had 5% to 10% of the income and 5% to 10% of the expenses I have today.  But, in those days they didn’t bill an insurance company.  They scrimped a little, and simply paid the bill.

Physician Office Visit Costs

doctors office lobby

All medical care is expensive!

There is no question that medical care is very expensive.  The best medical care can cost more than easily available treatment.  However, many doctors have a lower rate for cash payment patients than they charge to insurance companies for the exact same appointments and services.  In the U.S., the average cost of a visit to a doctor’s office for uninsured patients is anywhere from one to three hundred dollars:

Family practice: $95 to $265
Specialist: $115 to $325
Rheumatologist: $91 to $137

wiki.answers.com

The cost of a doctor visit in the United States varies depending on the specialty of the doctor. For a general practice or family doctor visit the price tag starts at an average cost of $90 and a specialist usually costs anywhere from $115 to $325.

www.ask.com

Keep All Possible Costs Under HMO/PPO Coverage

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Keep the PCP in the Loop

Fees for other services can run up the total office visit bill, like x-rays, drawing blood or receiving injections.   Whenever possible, I limit the specialist’s service to just the exam and consultation.  Then, for injections or other treatments, I go to my family practice HMO doctor or get his referral for extra services or procedures that the specialist requests.  He knows and agrees to this approach, and the two doctors make a great team.  The key is that my HMO primary care doctor highly respects my specialists.  He is the one who referred me to them.

This approach also helps keep my primary care physician and health insurance company in the loop with the current state of my specialist’s treatment recommendations, even though he is not covered by my insurance plan.

I see my primary care physician for everything non-lupus and the two doctors send each other office notes about each visit.  My primary care doctor does medication management, and does all the routine blood tests.  I ask for that and insist that they communicate through sharing records.  Both doctors get copies of all lab and diagnostic reports.

Searching Within Your HMO/PPO Plan

HMO Image

Working within the HMO/PPO

If your health insurance is a Health Maintenance Organization (HMO) or Preferred Provider Organization (PPO) plan, finding the best doctors and specialists can be a great challenge, especially if you live in an isolated or rural area where there are fewer medical providers to choose between.  In major cities, there are usually a cluster of doctors available, but rural patients may have to travel many miles to see a qualified specialist.

It is important to find a doctor who is familiar with your medical condition.  At http://ww2.rheumatology.org/directory/geo.asp ,  you can find one of the 5,392 rheumatologists in the United States who are members of the American College of Rheumatology (ACR).  There are about 300 lupus patients for every ACR member rheumatologist in the United States.  There are over 8,000 patients with some form of physician diagnosed arthritis for every ACR member.

Here are some recommendations for locating a good doctor for your lupus:

  • Talk to another medical doctor that you know and trust, and have them look at your HMO list and recommend a couple from the list.
  • Contact the Lupus Foundation of America local chapter for a physician list for your area, and look for one of the recommended doctors on their list who is also on your plan.  This is a great strategy when you are moving and don’t know any doctors in your new town.
  • Contact the Arthritis Foundation, use the same approach as above with their list of certified specialists in these organization who practice in your area on your HMO or PPO list.  If you compare Lupus Foundation and Arthritis Foundation lists for an area, you are likely to find many rheumatologists common to both referral lists.
  • Attend a Lupus Foundation support group meeting in your area and take your HMO/PPO doctor list with you.  Ask if anyone attending especially likes their rheumatologist, and ask to speak with them about their doctors after the meeting.  Make notes on your list for later reference.
  • Search by zip code and specialty at the U.S. News & World Report Doctor Finder Website @ http://health.usnews.com/doctors
  • Get an academic referral.  Here is an excellent strategy I read on a non-profit medical foundation’s web site:
    1. If there is no physician known to the patient by reputation, then the patient should try calling the closest major academic medical center/university hospital/medical school.
    2. Ask for the division associated with the specialty area, such as rheumatology or nephrology.
    3. Start with asking for the division chief directly or their assistant.  They may offer the name of the clinician within their department who has an interest in lupus.
    4. Many sub-specialists are willing to work with local primary care physicians.

Once you have found a couple good choices, you may want to invest time in an interview your prospective doctor.

  • Ask for a brief meeting (not a consultation or treatment appointment) to meet them and see if they understand your treatment needs and would be a good match for your care.  Some doctors reserve some their week’s schedule for meetings with drug representatives, other medical vendors, and should agree to a brief interview meeting
  • Be ready to give a brief summary of your medical conditions, and that you are looking for a new doctor and want to find out their philosophy of practice and treatment approaches.
  • Take along a list of questions to ask about their practice and treatment philosophy, and take notes.  It may be important to you to find out their views about alternative medicine, or have a strong opinions about supplements, or sometimes controversial medications such as prednisone or certain narcotics.
  • Ask about their office visit fees, about non-insurance rates and their views on referring lab work, etc. to your other HMO/PPO primary care providers.
  • Ask what they do if you wake up too sick to drive the day of your appointment, and whether they will charge you for a no-show when if you call as soon as possible that morning.  This can be especially important for patients with CNS involvement or patients in rural communities who travel long distances for treatment.
  • To make if interesting, pretend you are interviewing them for an article – or even do just that and write about the interview or the doctor (positive only, please, and ask their permission) on your blog!
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What cost-saving ideas do you have?  Here are some of mine: Cutting one of my weekly fast food trips and substituting soup and a sandwich helps cover the 3-4 times each year I pay the full price to see my rheumatologist outside my HMO. I cancelled my house phone and no longer have it and my cell phone. That saved me another $25 per month, or $300 per year. I love really nice label designer clothes, but refuse to spend my clothing money on anything but clearance items and at a couple of upscale consignment stores, so since I wear things several years, dressing usually one season out of style and in conservative choices with lasting fashion value saves me money. I only spend available pocket cash, usually $25 to $40 at any one time for clothing. I try to avoid consumer credit, credit cards and keep my budget available for current expenses, instead of past items of temporary value.  I wait until I can afford something or just don’t get it.

Prioritizing Medical Care Dollars

There is a dirty little secret about how accessible the best specialist in town is as part of your treatment team.  Even if they are not on your insurance plan!

Really!

Most people just assume they cannot afford to see a doctor that is not on their insurance plan.  Most people do not realize that the full cost of a specialist medical consultation is amazingly not much more than double or triple the cost of many HMO specialist co-pays.

Don’t be afraid to consider a rheumatologist who is not on your insurance plan, especially if they have a good reputation for treating lupus.

Ask yourself how much discretionary spending you do. My husband and I are able to find the $10.00 each week to put aside to pay for my rheumatologist.  This simple spending adjustment pretty well covers the annual cost of all my visits to the doctor (who we feel is the best rheumatologist in our state.)

A modest amount is withheld each payday into a medical flexible savings account (FSA), tax-free, along with other estimated medical co-pay costs.  I pay my rheumatologist with a debit card issued by my FSA.

The difference in a highly knowledgeable rheumatologist familiar with lupus can be just a few hundred dollars out of our whole years’ family budget.

The biggest cost for most lupus patients is the cost of medications, and lab work, not doctor visits!  Having a non-HMO specialist on your treatment team, along with a primary care physician who is on your insurance plan is do-able.  The biggest issue is finding a primary care doctor who respects the advice of your non-HMO specialist.

Your rheumatologist can function as your private medical consultant.  Your HMO cannot tell you that you cannot see a specific doctor.  As long as you can pay the office visit fee, you can see any doctor you want for consultation or second opinions.

A good HMO family practice doctor should not feel threatened by your rheumatologist, and probably won’t if they recommended the doctor outside your plan.  Try asking your HMO general practice doctor, “If insurance was not a problem, who would you go to if you had lupus?”

The difference in getting the right treatment advice has meant the difference between disability and working, and between living and dying for many lupus patients!

For someone who is able to work despite the challenges of their lupus, and has decent health insurance, affording the modest increase in costs for seeing a highly qualified specialist might really boil down to being a matter of simple financial priorities.

The $400 to $600 each year I pay to see the best rheumatologist in Arizona is the best financial investment I make all year!

When Thinking Outside the Box Really Mattered

think outside the box

Thinking outside the HMO/PPO box!

Co-pays for specialists on my HMO are $35 each visit.

Years ago, my rheumatologist, who was many years the Arthritis Foundation local president, and one of our local Arizona “top docs”, fired the HMOs.

He refused to let them tell him how to practice medicine.  He is still partly covered under PPOs that allow patients to select physicians outside the plan, and he still files Medicare claims for his patients, but is not a member of any local HMOs.

My family doctor highly respects my rheumatologist, and will not even give me a second opinion converse to his recommendations.  This makes working with an HMO primary care doctor and a non-HMO rheumatologist work.  Anything my rheumatologist recommends that will cost money, we take as a recommendation to the primary care doctor to get pre-authorized under the HMO.  It makes a great working team that meets my medical needs.

He is not a “rubber stamp” and sometimes comes up with great recommendations for the rheumatologist.  We are a team, me and my doctors.  He first suggested biologic drugs, and he first became concerned about liver function tests that led to a diagnosis of lupus liver involvement.  My primary care doctor is a critical part of the picture.

The real challenge to this arrangement came when my employer suddenly changed the health insurance company to a poor quality HMO company.   My long-term primary care doctor was not covered by the new company.  I felt very alone!

So, I took my HMO family practice doctor list to my rheumatologist, and I asked him who he thought he could work with on the list to coordinate my care.  So, for the next 18 months, I had to see a totally new HMO doctor, but had uninterrupted lupus care.  He was the constant that the HMO changes could not control.

This ended up being much more important than I would have ever imagined.  What followed was the worst 18 months of my health, ever.  My lupus was worse that year than at any time in the last twenty-five years.  The untimely insurance company change came just before my mother died, and during the year of my grieving that followed. I nearly died  from a ruptured abdominal artery, and my lupus flared uncontrolled.

As the year went on, my lupus progressed into organ involvement, including CNS and triggered spinal tendon/ligament collapse in an area of old cervical spine injury.  That year I also began the first in two extended series of neurological rehabilitation sessions to re-stabilize my spine.  Simply put, it was a bad health year for me!  Through all the lupus flares we found steroid bursts were no longer enough to control my recurring rampant lupus flares.

By the end of that year I had to start taking the cancer/transplant drugs methotrexate and Imuran (azathiaprine) for my lupus that I would continue for ten more years.  My HMO insurance pays for my lupus medications prescribed by my non-HMO Rheumatologist.  Many people do not realize that HMOs often pay for drugs that are prescribed by a non-HMO doctor or specialist.

If the insurance company won’t do this, a work-around is to develop more teamwork between your doctors.  Use your rheumatologist as a consultant to make prescription recommendations to the family practice doctor.  It is all about their teamwork and mutual respect that makes this work.  You must be part of that mix.

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Continuity in Treatment

If not for continuity with my rheumatologist that year, I sometimes wonder how my health would be today.  Would still have been alive at year’s end?  At a least, I was  facing disability and loss of my livelihood, if not worse.

The low quality HMO was so bad that my employer fired them in the middle of the second plan year, and went back to the earlier high quality HMO.  Relieved, I returned to my previous HMO primary care doctor, and treatment resumed as normal.

Next in this series:  Free/Low Cost Medical Treatment Clinics

Lupus and getting back into exercise

One in a string of mornings

This morning was one in a string of mornings when I have renewed my exercise routine in earnest.  It is so easy to forget how refreshing exercise can be when I wake up feeling stiff, aching and sore.  It is just simply counter intuitive to exercise when I hurt!  Once again, my poor memory recalls how much better I feel after just a few minutes of workout.

At the moment, I am slightly sweaty and headed for the shower.  But, I feel better than when I got up!  My breathing is deeper, my pain levels and stiffness are less, joint inflammation is down, and my endorphins are on the rise, pulling up my mood after them.

Increasing exercise to 30 minutes daily

Just a few weeks ago, my rheumatologist asked me how much exercise I was getting, and in honesty I had to admit it was not enough.  I have slipped lately and skipped exercise go too many mornings, and cut my workout time short on most of the days when I do exercise.  Letting myself get caught up in the hurry of last-minute morning preparations, lately my time planning and prioritizing to leave time for this important health priority has been poor.

As we spoke in more detail, my doctor concluded that the 15 to 20 minutes I have spent on my stationary bike a couple of times each week, with only 5 to 10 minutes of gentle yoga some of the other days, was insufficient.  He challenged (or perhaps ordered) me to slowly increase exercise to 30 minutes every day

My response as an obedient soldier in the battle against my lupus? “Yes, Sir!”

My exercise goal due date!

So, the plan is to build my daily exercise time back up by a couple of minutes more each week over three months, and kick up my exercise program a notch or two.  So, that is what I have been up to each morning.

Okay, I have missed a few days since my last appointment, but I am definitely increasing my compliance and doing exercise most days now.  I am up to about 22 minutes and hope reach 25 minutes soon — by the end of October.

In due time the weight will come off, too

My next milestone will be 30 minutes daily by the time of my next doctor visit at the end of November. Working back up slowly is joint and tendon friendly, and helps prevent injury or flare of my lupus arthritis from over exertion.

I haven’t lost much weight yet, my secondary goal, but I have faith that in due time that will come, too (or would that be “go?”)

They say its takes 21 days to make a new habit, and I now am well on my way back to habitual exercise.

Living with Lupus: Fact #23 – Lupus nephritis and my friend

Living with Lupus: As many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require treatment.  I have known several lupus patients with kidney involvement, but only one person’s story stands out above all the others as both a wonderful and horrible example.  My friend was courageous and undaunted in her battle with lupus, while her medical treatment plan was fatally flawed.

My friend had lupus nephritis

Several years ago, a wonderful woman in my church was suffering with end stage renal disease.  For years, she and her husband taught bible classes to our children and hundreds of others in the church.  She lost her husband to a pituitary tumor, and in the years that followed, her Lupus went on to destroy her remaining kidney function.  Many people prayed for her and helped her any way they could, and she kept her cell phone close, even during church services waiting for the call that a kidney had been found for a transplant.

lupus nephritis

During all her battle with lupus nephritis, her treatment never involved a rheumatologist to our knowledge.  Many times, several of us who knew her, including a couple of doctors that attended our church, encouraged her to strongly to seek out a rheumatologist to treat her lupus,   She kept telling us that her nephrologist planned to send her to one eventually, telling her, “we will treat the lupus once we get your kidneys under control.”  We encouraged her to push for a referral, or to even go see my rheumatologist, but she was passive and unwilling to push her nephrologist for a different approach.  She wouldn’t question him!

We all tried to explain to her that if lupus was what was causing her kidney failure, and they would probably never get her kidneys under control without controlling her lupus.  From what she told us about her medications and treatment plans, it was clear that her doctor never addressed her lupus!  Meanwhile, she continued to attend church services, prepare financial statements as the church treasurer, and even sang in the church choir.

kidney transplant

One day, she finally received the call and a successful kidney transplant surgery was done! For awhile, she was so much better.  But, she still did not see a rheumatologist.  Although the anti-rejection drugs she was receiving were doing a great job of preventing the organ rejection, they were not controlling her underlying lupus.   Although we continued to urge her to seek out a rheumatologist, she never did.

Eventually, she began to have problems with lupus attacking her transplanted kidney!  But, still, no rheumatologist. She was losing her transplanted kidney, not from rejection, but from lupus. 

About this time, I attended an LFA patient/doctor conference held in Alaska.  When I saw one of the physicians’ continuing medical education sessions was going to be taught by one of the world’s leading nephrologists, I decided to sit in with the doctors and listen.  I sat in the back of the conference room, thinking about my friend as I listened to discussions of the standard treatment protocols for lupus nephritis.  I realized from what my friend had told me about her medications, none of the standard treatments were tried on her.  I became more frustrated as the session progressed.

The most profound information I took away from the session what that almost without a single exception, emphatically, a lupus patient should never lose a transplanted kidney.  I spoke with the speaker after the session, and asked about the likelihood of losing a transplanted kidney.  The response?  “Once the physicians realize a patient has lupus nephritis, they know what to do to prevent loss of the transplanted kidney.  It is unheard of to lose a transplanted kidney to lupus.  That should never happen!”

But, this was not the case for our friend.  No one ever treated her lupus.  It seemed clear to me then that she might have been an unfortunate of victim of ignorance and unintended malpractice.  She never was referred to a rheumatologist, let alone ever receiving the prevailing standard of care for her lupus nephritis that I had learned about at the conference.

peritoneal dialysis

Eventually, our friend completely lost all kidney function, and began peritoneal dialysis while awaiting a second kidney transplant.  She got weaker and weaker, her skin became paper-thin covered with deep purple splotches, her hair  became sparse and fine, and her heart and lungs became weak.  She eventually became so ill, the sad day came when she received the word that she was permanently removed from the transplant waiting list.  She was never going to get another kidney.

A handful of us felt so helpless, as our many attempts over the years to convince her to be proactive about her treatment failed.  We were frustrated as we had to accept that she just didn’t have it within her to question her doctor or seek a second opinion.  Ultimately, that was her choice, and we had to respect it.  But, eventually it was too late. It was not too long after she was removed from the transplant list until we lost our dear friend.

Lupus took her kidneys, but not her joy

She was a close friend to many people near me in my life, my mother-in-law, many of my best friends and all the children whose lives she had touched over the years, including my own kids.  Through all her struggles, this amazing woman’s personal faith in God and unquenchable joy seemed to overcome all the emotional challenges of her long battle with illness and organ failure.

Remarkably, she never displayed any bitterness about her lupus and kidney failure, never considered blaming her doctors, and she patiently endured the unsuccessful treatments she received.  Through all her lupus battle, she inspired and encouraged everyone who knew her.  She never ever complained about how she felt, and kept a cheerful, sunny disposition to the end.  Our dear friend had lupus, and it took her life, but it never took away her great joy.

Even now, many years later, her name is mentioned as an inspiration and an icon of nobility and courage in the face of fatal illness.  She will not quickly be forgotten.

Coping with Lupus: Fact #18 – Lupus increases osteoporosis risk – Put on Purple – Today!

Lupus and Bone Loss

Coping with Lupus: Women with lupus are at increased risk for loss of bone mass (osteoporosis) and are nearly five times more likely to experience a fracture.  Everyone with lupus should become knowledgeable about osteoporosis.  We all need either a treatment plan that reduces bone loss risk, or to treat and possibly reverse  bone loss.  For years, my bone density remained above the normal range, but after many years of steroid treatments for lupus, my bones were finally losing density and needed more attention.

Got milk?

My diet has always included large amounts of natural calcium, including milk, yogurt, cottage cheese, cheese and many fresh vegetables that provide rich sources of calcium.  Even though my bone density has been good over the years, usually 100% to 110% of the normal range, my rheumatologist has insisted that I include bone-supporting supplements of calcium and vitamin D in my daily routine.  He followed me with periodic bone density tests as medically responsible due to my continued dependence upon daily low dose steroids as part of my overall lupus treatment plan.

Actonel

Declining bone density and osteoporosis medication – a rare bad reaction!

However, at my first signs of declining bone density exam results, dropping several percent below normal, my rheumatologist prescribed Actonel, in a once-a-month dose osteoporosis medication.  Unfortunately, I had an extremely bad experience with this drug!  After taking my first dose, within just a few hours I felt the onset of the most severe deep skeletal bone pain I have ever felt in my life (or even imagined in my worst nightmares.)  Every single bone in my body hurt, and even the entire length of every rib, by skull and my jaw hurt intensely.  There was no escaping or distracting myself from the overwhelming reaction I experienced to the osteoporosis drug.

The debilitating and excruciating bone pain lasted for several days, and I lost a whole week of work remaining in bed on pain medications, just to cope with the drug reaction to Actonel.  The patient drug information sheet includes a warning about the possible rare side effect I experienced.  My doctor immediately took me off the offending osteoporosis drug.  Even if my doctor had not advised me to stop taking Actonel, I would have made that decision all on my own!  That was clearly a “no brainer!”

Too “chicken” to try again!

Negotiated non-compliance with an alternative

A couple of months later, my doctor prescribed Boniva, a similar drug.  After filling the prescription, I just refused to take it.  I just didn’t have the heart to try again.  I looked at the unopened package over and over, picked it up and read the same warnings on the package that were on the Actonel package, and even once broke the blister and held the pill trying to convince myself to take it.  I just simply “chickened out” and tucked the pill back into the blister pack and placed it back on my medicine shelf. (It sat there for two more years, not taken.)

Stubborn, gutless wonder…

After my first experience with this class of drug, I could not muster up the courage to try Boniva.  Despite my rheumatologist’s protests, I refused to take any another similar drug.  This was one of my most notable times of being a completely non-compliant patient, when I was absolutely unwilling to try something my doctor prescribed.

So, instead I negotiated insistently with my doctor.   I proposed that, if after six months of increased weight-bearing exercise and increased calcium and vitamin D supplements my next bone density exam did not return to the normal range, then, and only then I would give another osteoporosis drug a try.  He agreed.  If my next bone density exam improved to a normal range, he would let me forgo any new osteoporosis drugs.

Calcium with Vitamin D

Weight-bearing Exercise and Supplements

My increased efforts to build my bone strength were ultimately successful, and so far, I have succeeded in keeping my bone density at normal or near normal levels without adding osteoporosis medications.  A couple of years after the Actonel experience, I finally threw the unused Boniva prescription away.  Exercise, a calcium rich diet and calcium supplements that include vitamin D are still critical.  I hope that this approach will always be adequate, but if not, I must keep my promise to my rheumatologist, and will be willing try another drug to preserve my bone health and reduce fracture risks.

For many lupus patients, diet and supplements are inadequate to prevent declining bone density, but thankfully, the extremely negative reaction to osteoporosis medications that I experienced is extremely rare, and is not the norm.  Most patients should definitely try taking the drugs their doctors recommend to treat their osteoporosis or reduce risk of potential bone loss.

Learn about Bone Loss

A good place to start for every lupus patient is to read more about lupus and bone loss.  Here are some very reliable sources of patient information about osteoporosis and Lupus:

What People With Lupus Need to Know About Osteoporosis, by NIH

Bye-Bye, Bone Loss, by Amy Paturel, M.S., M.P.H.

Osteoporosis, by LFA

Lupus and Osteoporosis, by LFA

Don’t Forget to Put on Purple Today!!

Don’t Forget to Put on Purple Today Before you Leave the House!

The next thing to do is to talk to your rheumatologist about your bone loss risks.  You may have normal bone density and might be dodging the bone loss bullet, but perhaps  you are experiencing progressive bone loss.  You and your doctor should discuss your status and the health of your bones, and decide if a treatment plan for osteoporosis is right for you.  You rheumatologist will probably recommend a bone density scan.  The scan is painless and takes just a few minutes in the doctor’s office or radiology lab.

Remember:  Whatever else you do to protect your bones, just don’t forget to do regular weight-bearing exercise!

World Lupus Day – Treatment of Lupus: Fact #10 – It is expensive!

TODAY is World Lupus Day!

The Diagnosis and Treatment of Lupus:  Lupus can be an expensive disease.

The Lupus Foundation of America (LFA) reports that “the average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.” However for those of us who are receiving the new biologic drugs, the real cost to our insurance companies is now many times greater than treatment with the standard medications included in the LFA’s estimates.

Biologic Drug Infusions Cost More than other treatments

Costs for the New Biologic Drugs are More

I recently discovered that the real cost to my self-insured employer for my first nine Benlysta infusions was about three times the amount estimated in the literature I had read from the drug company. In a conversation with my rheumatologist, he validated that the charges were reasonable and customary for infusions administered in an outpatient hospital setting.

Apparently, the published cost estimates for Benlysta of about $40,000 per year are based upon the costs when infusions are administered at the rheumatologist’s office. The drug is ordered through a pharmacy by the physician, and paid for through the patient’s prescription coverage and applicable co-pays.  However, in a hospital outpatient setting the drug is paid for under a patient’s major medical insurance coverage.

Costs for Lupus Treatment have risen

Costs have gone up in recent years

In comparison, several years ago when I had two Rituximab infusions, the entire billed cost for both eight-hour infusion sessions in a hospital outpatient cancer infusion center cost about $38,000. The drug costs were paid by Genentech, the drug manufacturing company under a Phase III clinical trial for lupus. My insurance company agreed to pay the $3,000 required for the outpatient infusion center and the infusion procedures each time.

My other medications cost my employer and me thousands of dollars each year. While also treating for asthma and allergies, the majority of my medication costs are borne by my self- insured employer through a health insurance company working as the third-party administrator.  My coverage has an annual stop-loss of $1,000 for my prescription co-pays, which is a great blessing.  The stop-loss helps keep a predictable limit on my out-of-pocket medication costs each year, but the $1,000 I pay is a small fraction of the total prescription costs paid by my employer’s health insurance plan.  After mid-year when my co-pays reach $1,000, my remaining prescriptions for the year have no more co-pays.

Total costs are more with late lupus diagnosis

Total Medical Costs, Even with Co-Pays are High

Other medical costs include medical co-pays.  My rheumatologist is not a member of any of the health maintenance organization (HMO) insurance plans, as his thriving practice does not financially require him to submit to the limitations of the insurance companies for his livelihood.  My primary care physician, who is a member of my insurance plan, coördinates and supports the recommendations of my rheumatologist for my care.  I pay the full price for all the office visits with my rheumatologist, usually somewhere between $85 and $140 per visit.  This extra amount per visit over the amount I would pay to see a specialist on my health insurance plan ($35) is a small price to pay to get an expert in lupus to manage and oversee my treatment plan.  Every year I pay a few hundred well-spent dollars to my rheumatologist.

All procedures, lab work and diagnostic exams are paid through my primary care physician and providers covered by my insurance, without any co-pays for most of these services.  My total out-of-pocket co-pays and prescriptions usually total around $3,000 per year.  I estimate the total costs to my insurance plan are an extra $130,000 to $150,000.   Before the Benlysta infusions, the total costs were probably closer to $30,000 to $50,000 in years I had no hospitalizations.

Why are my total costs so high, compared to the estimates from the LFA?  My lupus was not diagnosed until it had escalated to a more advanced level and eventual organ involvement.

World Lupus Day is May 10, 2012

Why is lupus awareness so important today, on World Lupus Day?

The early diagnosis and treatment of lupus helps limit the severity and mortality of lupus.  If I had been diagnosed as a child and treated with the normal standard care for lupus throughout the first half of my life, my lupus might have remained in a mild state.  The progression to organ involvement also means the increase in costly payments and medications, providing there are funds and coverage available to pay for them.

For women without insurance resources, the early diagnosis and treatment of lupus is even more critical!

Efforts to treat mild lupus, and keep it from progressing and worsening will limit the extent of severity and costs for treatment throughout the life of a lupus patient.  The costs for treatment of mild lupus, controlled by Plaquenil and occasional steroid medications, might stay affordable and available for most patients, even if they have no insurance coverage.

The costs of treatment like what I receive for my lupus are absolutely unavailable to most patients without insurance coverage or even funds to pay their sizable co-pays.  I am grateful and thankful for the resources available to me to pay for my lupus medical care!

World Lupus Day – Sign the Pledge!

Early lupus diagnosis means a longer healthier life and lower medical costs

Lupus awareness means patients are diagnosed earlier.  Earlier diagnosis means less severe lupus over the course of a patient’s life.  Less severe lupus means less risk for organ damage and lower mortality rates.  Lupus awareness means improved lupus quality of life and longer life span for every lupus patient who is diagnosed and treated in a timely manner!

Sign the World Lupus Day Pledge!

Diagnosis and Treatment of Lupus: Lupus Fact #8 – Rheumatologists and specialists treat lupus

Diagnosis and Treatment of Lupus:  Lupus is primarily treated by a rheumatologist, a physician who specializes in conditions affecting the joints and muscles.  Most lupus patients see several different doctors over a several years before they finally get an accurate lupus diagnosis.  My family doctor who finally suspected an autoimmune cause to my health problems, referred me to a rheumatologist who specialized in treatment of autoimmune diseases such as rheumatoid arthritis, gout, and lupus.

Other types of doctors that treat lupus

Some people with lupus may need extra care from specialists when persistent symptoms or organ threatening lupus complications may require the involvement of specialists who are highly knowledgeable in treating specific organs and body systems, such as:

Many specialists treat lupus

Dermatologists – cutaneous lupus, discoid lupus rashes, sun sensitivity, and some more serious lupus skin conditions

Nephrologists – various stages of kidney disease, kidney dialysis management and post-transplant care

Cardiologists – pericarditis, endocarditis, lupus valve damage, congestive heart problems secondary to lupus and extended steroid treatments

Opthamologists – annual eye exams for patients taking Plaquenil medication, treatment of cataracts from extended steroid use

Neurologists – central nervous system (CNS) lupus, neuropathy, peripheral neuropathy, seizures

Gastroenterologists – lupus liver involvement, elevated liver enzymes, lupus digestive system inflammation and other symptoms

Dentists and Otolaryncologists – sjogren’s syndrome, oral and nasal ulcers

Orthopedic Surgeons, Chiropractors and Physical Therapists – rehabilitation and surgery in damaged joints and weakened connective tissues and ruptured tendons

Rheumatologists treat lupus

Since nearly any system of the body can potentially be affected by lupus, or by medications used to treat lupus, nearly any type of medical specialist might become part of a lupus patient’s treatment team.  Usually, rheumatologists are the primary physician involved in oversight and management of a lupus patient’s overall treatment and medications.  My rheumatologist and family practice doctor work closely together to coördinate the treatment of my lupus, asthma, sleep apnea and degenerative disk disease.

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