One Patient's Positive Perspectives

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.


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

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.

Keep All Possible Costs Under HMO/PPO Coverage


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 ,  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 @
  • 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!

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!


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.


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


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