January 22, 2011

Long overdue update

It has been a really hard year but it is all getting better. We have finally found a pain doctor that actually cares about treating the pain. Also this week we saw a research Neurosurgeon and he is referring us to a research endocrinologist. She has done a study on a new treatment with success in a male with FD of the skull. The article was published here: http://www.refdoc.fr/Detailnotice?cpsidt=23344128&traduire=en

We are very hopeful that Sean will be a candidate for this treatment as it beats having the bone drilled out with the possibility of vision loss.

I will update after we meet with the endocrinologist. I am prayerful and blessed by even finding a doctor that knows the condition well.

March 11, 2010

My Insurance Story

For all of you that stopped here in hopes of a horror story about private insurance just keep looking this is not that story.

My condition (fibrous dysplasia FD) was first discovered by the Veterans Administration (VA) in 1993. Interestingly enough once I turned 21 my records were conveniently lost. The VA would forever be responsible for my care if the records existed. I did not see another doctor again until 2005 due to my dislike of the procedures the VA offered. These details can be found in other posts.

By the time I went back to a doctor I was insured on my wife's private insurance. In the past three years I have visited multiple specialists and have received many perscriptions and in all this time I have only had three refusals of payment from the insurance company. Two of these were for perscriptions and the insurance company recommended a different brand of the same drug that they would cover. The recommended drugs were the exact same as the one my doctor had ordered but they were not as expensive.

The only other time I had a refusal it was easily fixed. The issue occurred when I applied for Social Security benefits (which were denied because I spent too much time trying to work instead of just applying and not trying to make it on my own for years). The Social Security Administration denied my claims but generated paperwork that made it appear to my doctors and then the insurance company that I had another primary insurance. This meant that my insurance began to refuse claims because they were no longer listed as the primary insurer. This fix was as simple as cutting butter with a hot knife; I called the insurance company and described the problem. The customer service rep looked up my information and confirmed the issue. She then asked me to hold for about five minutes. When she returned to the line she informed me she had fixed the data in their system and resubmitted the claims. Problem FIXED.

When it has come to specialists I have never received a refusal. As long as I assure the specialist is in network my costs have remained low and I have always been able to find a highly qualified specialist. 

A little over a year ago I had a major surgery and the insurance company approved the surgery and paid for everything. Now I know my wife did call the insurance company and do the pre-certification herself. She tells me this is because even though the doctor and the hospital are in network the anesthesiologist and other medical staff may not be participating in the plan. She always calls on the per-cert herself and does not leave it to the surgeon because when she calls the insurance company walks her through everything and then she knows what is covered and what is not covered. In our case the surgical assistant's full price would not be covered but he was willing to take the insurance negotiated amount so he could work with the surgeon. As noted in the past these little steps of directly working with the insurance company have always allowed us to get the services we need while keeping costs low.

On the other side of the issue I know multiple people that have struggled through care at the VA. I know consultants that have been hired to work with the VA to improve care. In one case I know of a VA project that has VA staff and the staff of two consulting firms working on outsourcing veterans care to private hospitals so that the veterans receive better care. I know of people that finally paid for their own surgeries because the VA refused to allow surgery even though their doctor recommended the surgery. I know of one man that had to fly from CA to CO to get a routine preventative test because the CA hospitals could not get him as soon as the VA insurance demanded he receive the test or lose benefits. I know of multiple people that have had to have scans and services done multiple times because their files have been lost.

My personal experiences make me unwilling to place my private insurer on the gallows so if you want to hear a story about private insurance abuses I am not the man to ask.

March 3, 2010

Living with FD a Wife's Story

I have decided the time has arrived for me to tell my story of living with Sean and fibrous dysplasia (FD).

The early years of our marriage were so hectic for various reasons that FD never seemed to be an issue. I was not aware of the extent of the condition or the extent of Sean's pain and I really did not become aware of Sean's pain level until he quit drinking. However, when you have married an alcoholic and they "recover" you find yourself living with a different person and once again FD was not at the front of my mind. I can look back now and see that many of these early struggles were aggravated by FD but I really did not have an understanding of Sean's condition and Sean has a tendency to not tell you when he is in pain.

Once our marriage stabilized I started to become more aware of how FD was affecting Sean. Over the years I have noticed that during times of high stress Sean's pain is much worse (not unexpectedly). I also noticed  that at these times you could see noticeable growth in his brow bone. Even before we had MRI scans to measure the growth level I could physically see the growth and the change of his facial features.

In September of 2008 Sean had facial reconstruction in hopes that some pain would be alleviated and to shape his face back to normal. The surgery was the most trying time of my life. It had only been a year since Sean had gotten on a good pain therapy and was himself. I stayed at the hospital during the four hour surgery time and received updates from the operating room about every hour. Once Sean was moved from the recovery room into a hospital bed a nurse shot his IV morphine directly into his vein and Sean started to have trouble breathing and his lips and toes were turning blue. Praise to God that the head nurse arrived in time and was able to give Sean another shot that revived him. After this experience Sean was not willing to be left at the hospital alone so I spent the next four days by his side. The hospital also would not give Sean his sleeping pills so we both spent all this time awake. When Sean came home from the hospital he was on major pain meds and was very sensitive to light and sound so I spent the next two weeks trying to keep all the pets and the kids outside. The extreme sensitivity to light faded but the sound sensitivity is with us still today. To be honest I often ask myself if we did the right thing by having the surgery because for 14 months after the surgery I felt as if I had lost my husband.

During the past four months we have achieved a quality of life for our whole family. Of course if you have been following this blog you know that last month that was thrown into chaos. As we are now facing a new round of pain management I will explain the emotional roller coaster I have lived on and that I fear repeating.

Over the years I have learned that Sean usually has three reactions to medicines. One reaction is extreme aggression. Another reaction is extreme docility and loss of muscle control. The other common reaction is hyperactivity. All of these reactions are coupled with an inability to make good decisions. For example one time Sean went to the store and bought $100 dollars of Pringles because he was sure that my mother had asked him to. I was out of town and he called me from the store because he could not remember how he got there or where the car was parked. After this the whole family learned that even the drugs that Sean had been on for months could have different reactions on different days.

We worked with our doctor to determine a pain therapy that very seldom had these reactions and that were predictable enough for me to know what to expect. Now that we have to change doctors I am faced with losing my husband. When Sean has any of these reactions to a medicine I lose the man I love as his personality becomes so different. I set here today with my husband and wonder how long I will have my better half. I remember so clearly one day walking through the grocery store with Sean following me like a puppy dog and tears still stream down my face. I called my best friend that night and said I'm afraid I saw my future today and it feels like my spouse died. Thankfully we were able to get on a therapy that brought Sean back to me but my heart quakes as I think of our Dr. appointment Friday to look to an alternative medicine as we can no longer seem to find a traditional doctor that is not afraid to give pain meds or wants to treat Sean as a Guinea pig.


My Fibrous Dysplasia Story

I have had FD since child hood but the condition was not discovered until I was in a bad motorcycle accident and amazingly did not sustain any noticeable head trauma. Due to the severity of the accident (and the fact I was conscious - against all odds) the doctors did a full body MRI. To their amazement my skull was abnormally thick and not broken or fractured. This discovery led to mass excitement in the emergency room and eventually to the second best neurosurgeon in the military.

The year was 1993 and I was twenty years old and not ready to face reconstructive surgeries. Especially given the fact that the first doctor I saw was way to abrupt in his description of the surgical options. Since the medical records from these first visits were lost by the military I do not have a baseline of the growth in 1993 but I know the skull was thick enough to sustain a 40 mph impact with a retaining wall. Ironically FD saved my life.

I met Yvette later in 1993 and we married in 1997. I did not seek medical care for FD from 1993 until 2005 due to the fear of having doctors "crack open my skull and scrape it out". During these years I self medicated with alcohol (a story for another time). In 2005 a personal tragedy led Yvette to a counselor and she recommended a doctor for Yvette to visit. Once Yvette saw Dr. K he diagnosed her life long pain condition that no other doctor had diagnosed in 30+ years. She learned to trust and like Dr. K and finally convinced me to visit the doctor. Dr. K was able to win my confidence and to start a series of tests and specialists visits to determine what options were available to me.

I have seen various specialists including ENTs, pain management, and neurosurgeons. In September of 2008 I had facial reconstruction surgery in hopes that some pain would be alleviated if the nerves in my scalp were deadened. At this time the external bone of my skull was shaved and reshaped. It was also determined at this time that going into the skull was too risky as the bone is embedded in my frontal lobe and I have no desire to receive a frontal lobotomy. Since September of 2008 I have worked with Dr. K to maintain a pain management treatment and you can read more about that in my other blog entries.

March 2, 2010

Update on Sean's Pain Management Fight

I just returned from the pain management clinic. What an experience! I had to take a drug test and learned that there is a database (PDMT) kept by the state that my name is on due to being on pain meds. I have to say I was horrified to find that the state is tracking my prescription use. While I understand there being a drug culture what gives them the right to track this with out my knowledge?

This doctors "office" was crazy. The office was dirty and in no way felt like a medical facility. It was located in a warehouse and felt like one. There was no lobby and chairs had to be fetched from other rooms for waiting patients. The exam room was actually an acupuncture room that had once been an x-ray room. There was a fight (yelling) between one patient and the doctor and people walked out of their appointments.  The staff was unfamiliar with this "satellite" office and needed our assistance to give driving directions to other patients.

Moving on to the consultation. Once again I am faced with the choice of being a guinea pig for new drugs and therapies instead of being allowed to just continue the therapy that my general practitioner and I have found to work. The doctor seemed competent but actually stated she did not care about what I had tried in the past she was just looking to start over with the process. She was more than happy to prescribe opiates but wanted to take me through all the trial and error I have already done. However her willingness to send info to my GP is reassuring as I will continue to consult him through all therapies. The next steps for this clinic is for my drug test to come back from the lab and for the PDMT report to return clean. Then they will determine if I can be accepted into the program.

Overall I was very uncomfortable with this whole visit and on Friday I am going to another pain management clinic to discuss alternative medications.

February 27, 2010

How We Manage Health Care Costs & Quality of Care

This is the story of how we have worked with our doctor to manage the costs and quality of care for Sean's rare condition and our families medical care.

To control our costs we utilize a few simple but effective practices:
  • We make sure our general practitioner (GP) has records from all other doctors and that we never have a test or receive new medicine without our GP's knowledge. This not only controls costs but keeps us from endangering a life by having conflicting prescriptions.
  • We take our insurance Rx formulary (a list of prescriptions covered by our insurance) with us to all appointments and check to make sure any perscriptions given are on the formulary. If they are not listed we find a comparable Rx that is on formulary. Note: we have always been able to find a comparable Rx that is on the formulary or have been able to work with the insurance company to get the Rx approved.
  • We retain copies of all tests, x-rays, scans, and doctor files. We take these with us to any new doctor so that scans etc. do not need to be repeated.
  • Two people attend every appointment. This assures we hear and understand everything and that the doctor receives the full picture of our sickness from our and our family's point of view.
  • We ask questions and understand our conditions and the treatments available as well as the risks and benefits of every treatment.
These simple practices have not only kept our costs down but they have also assisted us and our doctors in improving our quality of care. We take personal responsibility for our health care and do not rely on our doctors to be alone in understanding our conditions or our treatments.

I realize at this time it is popular to hate private insurance companies but we can not engage in that activity. During the five years that we have had private insurance we have received much more than we have given. When we have worked with the insurance company we have always been able to find a common ground that allows us a great quality of care while allowing them to control costs. We view this as a civic duty to assure that our friends, neighbors, and fellow countrymen do not have to pick up costs we could avoid.

Our experience with private insurance stands in great contrast to Sean's previous experience with the military and our private insurance has provided many options and speed of care that we do not see with our family members that have VA, or Medicare.


How Government Health Care Regulations/Practices are Ruining my Quality of Life

My name is Sean Cowlishaw and I have a rare condition (fibrous dysplasia of the skull). In short my skull has never quit growing and bone is surrounding my optic nerves, has filled my sinus cavities, and is putting pressure on my brain. My condition is extremely rare in that the bone growth did not end in puberty and the bone continues to grow to this day (I am in my thirties).

About three years ago I finally found a doctor that not only helped me find answers but that works closely with me and my family to assure us a high quality of life. I have also been blessed in that I have had good insurance (for the past five years) and a wife that understands the health care system. My wife and I have worked closely with our doctor to keep costs down for both us and the insurance company and to maintain a high quality of care (see my blog entry about cost containment).

As the Health Care Reform debate heated up in 2009 my quality of life was significantly lowered. The first blow was that my costs for specialists were raised due to the media and Congressional blitz about high quality insurance plans. At first this was not a huge issue for me as I have seen ever specialist possible and there is nothing they can do for my condition. The specialists had sent me back to my general practitioner for pain management and for almost a year my quality of life was the best it had been for a long time. I had one doctor managing my care and he took all aspects of my quality of life into consideration as well as doctoring my full person not just my fibrous dysplasia.

In February of 2010 the second and worst blow fell. I was called into my general practitioner's office and told he was no longer allowed to practice pain management. The clinic management has determined that because of the DEA practices of treating pain management doctors as drug dealers it was too big of a risk for their doctors to prescribe pain medicines. The clinic was only able to give us the names of two practices that are still willing to prescribe pain meds. One option will cost us and our insurance three time as much as our general practitioner. The other option costs over $1000 more a visit and is not covered by insurance. We have our first visit with the new doctor on Tuesday and will update this blog continuously.

January 12, 2010

Helping horses as more are abandoned

Many people are abandoning horses due to the economy.

We can help with even a small donations or by using services like igive .

Freedom Ranch, a 501c(3), is a great Colorado based Horse Rescue that needs your help. Donations can be made to Freedom Ranch, PO Box 969, Byers, CO, 80103...or debit and credit card donations accepted through PayPal at: Shealeigh64901@cs.com.

October 20, 2009

Our response to Obama re: Health Care Reform

Thank you for your reply. I appreciate the respect you showed me by responding. However, you have not actually addressed the question I posed in my email. I asked how my family would be affected by the bill due to the fact that private insurance is our livelihood and has done a great job at giving me the quality of life I have while I deal with a very rare condition.

I agree with the theory that all Americans should have free Healthcare. Forcing people to acquire this care through the government is not a viable road and is taking away my choice. Americans should not be fined if they choose to not have healthcare.

Although in the past some insurance companies have been underhanded they do take a great risk when insuring someone with a pre-existing condition. We pay 16 thousand a year for our insurance due to my disability. However, the insurance has spent more on me than I have had to pay. You can not guarantee my quality of life if I am forced into a cookie cutter plan. Just to be clear I spent many years with out insurance and many before that on military benefits and the private insurance has given me much more than the government. Insurance companies have the right to protect themselves and to make some profit.

SCHIP has existed for years and to continue and even build on this program is not you doing something new. As for doing more let’s do what is right and fix the actual issues not just make more government. As for the Recovery….Act that has not helped at all. Most of this happens years down the road and interestingly enough at election times.

Also stop with this inherited stuff. I’m in no way stating that the previous administration was great but you promised to move forward and you are not!

As for getting this done this year I want it right not fast. You are doing yourself and America a disservice by rushing this bill and not assuring we are fixing the actual root problems.

I firmly agree that we need to support our veterans. We have a personal stake in this. Having military family with PTSD we have seen no change in these military members being allowed care. This is truly something your administration is failing at and you need to work on it before trying to tell us you fixed this issue. By the way killing them off with toxic drug combinations and pulling the doctors that are actually helping them is not the answer.

Looking forward I agree that tough choices do need to be made but patients need to come first not political parties. It is the American people who need to be allowed to come together to make healthcare correct.

Trust me we know the forms and the struggles of insurance but we also know how personal accountability and engagement can mitigate that paperwork. We would also stress that often that paperwork is generated by the doctor, hospital and the government not the insurance company. There are now due to the Recovery…Act over 4 privacy laws on the books that insurance, doctors, hospitals etc. have to comply to that add extreme costs to healthcare. If you want to start helping costs get these off the books and state simply that anyone sharing patient information with someone besides the patient or the legal representative of the patient will be punished. The end no book of words to state one sentence!

Given all this my original question has not been addressed which is how can you guarantee my current quality of life. Please don’t try to tell me I have to sacrifice for others because my family has spent our life serving others but we do not accept the concept that government can dictate what and when and how we give. I am sick of the rhetoric and politics. Take the politics out and stop the one-upmanship and lets do it right.

HC response from CO U.S. Senator Mark Udall

Once again a response that does not actually answer my question or address my concerns

Dear ----,

Thank you for contacting me with your concerns regarding health care reform.  I appreciate your taking the time to express your specific views on this important topic facing our nation.
As you know, many proposals have been put on the table for reforming our health care system to make it work for all Americans.  I recognize there are many, often competing, philosophies and ideas on the best way to move forward.  As your Senator, it is my job to listen closely to the various stakeholders involved in this process as well as actively seek out input from across the state to help inform my understanding of what is best for Colorado.  One thing I firmly believe, however, is that the status quo is unacceptable and unsustainable.
While we move forward in this debate, there are a number of key requirements which will guide my consideration.  Any health reform must: 1) allow people who like the coverage they currently have to keep it; 2) bring costs down so that all Coloradans are able to cover their families while staying within their means; 3) preserve the critical doctor-patient relationship, ensuring that decisions about treatment are made by those who know the patient the best; 4) call for insurers to provide coverage regardless of pre-existing conditions or medical history; and 5) be fiscally responsible.  By ensuring that these pieces are part of reform, we can provide the stability in health care that is currently lacking for hard working Coloradans - stable costs, stable coverage, and stable quality.  As Congress continues looking for the best ways to meet our nation's health care challenges, please know that I will always keep the best interests of Coloradans in mind.  Along the way, I will certainly remember your particular thoughts and concerns.
I will continue to listen closely to what you and other Coloradans have to say about matters before Congress, the concerns of our communities, and the issues facing Colorado and the nation.  My job is not about merely supporting or opposing legislation; it is also about bridging the divide that has paralyzed our nation's politics.  For more information about my positions and to learn how my office can assist you, please visit my website at www.markudall.senate.gov.

Warm Regards,
Mark Udall
United States Senator, Colorado

HC response from Obama

 Just a note this response did not address my question in any way. It also states that military are receiving better treatment for PTSD and I know many military not getting any help in anyway. I would also state that H.R. 2 was a continuation of an existing program.


From: The White House - Presidential Correspondence
Subject: Thank you for your message
To: -------------
Date: Monday, October 19, 2009, 11:41 AM

Dear Friend:

      Thank you for sharing your thoughts with me.  I have heard
from countless Americans struggling to afford health insurance and
health professionals striving to provide care.  I appreciate your
      There is broad consensus among the American people on
the need for affordable, high-quality health care.  The rising cost of
health care is the most pressing financial challenge for families and
for our Nation, and controlling this cost is essential to bringing
down the Federal deficits we inherited.  We must end unfair
insurance practices that leave millions of Americans without
coverage, denying them access to care, and exposing them to
extraordinary burdens.  And we should ensure that all small
business employees have access to affordable, high-quality health
plans so that we can make our economy--and our small businesses-
-more competitive.  Now is the time to move forward, and I am
working to get health insurance reform done this year. 

      Since I took office, we have done more to improve health
care than we have in the previous decade.  In February, I signed
H.R. 2 to provide coverage for millions of children through the
Children's Health Insurance Program, and I signed the American
Recovery and Reinvestment Act to make key investments in
computerized medical records and preventive services.
      Still, more must be done to lower costs, expand coverage,
and improve the quality of health care.  My 2010 Budget makes a
major down payment on health insurance reform by implementing
efficiencies in government health care spending while improving
the quality of care.  To help fulfill the debt we owe to our service
men and women, it includes the largest proposed single-year
increase in veterans funding in 30 years.  It expands health care
to an additional 500,000 veterans by 2013, implements
technology that eases the transition from military care to veterans'
care, and enhances screening and treatment services for those
suffering from Post-Traumatic Stress Disorder and Traumatic
Brain Injury

      Looking forward, there are tough choices to be made, and I
will seek to bring employers and workers, health care providers
and patients, and Democrats and Republicans together to create a
system that delivers better care and puts the Nation on a
sustainable, long-term fiscal path.  To learn more about my agenda
or to share a personal story, please join me online at: 
www.healthreform.gov.  For further information on health care and
assistance that may be available to you, you may call 1-800-
FEDINFO or visit:  www.usa.gov.

I share the sense of urgency that millions of Americans have
voiced.  I watched as my ailing mother struggled with stacks of
insurance forms in the last moments of her life.  This is not who
we are as a Nation; together, we will fix it.


Barack Obama

To be a part of our agenda for change, join us at www.WhiteHouse.gov

August 22, 2009

Health Care Administrative Costs

Earlier this year (2009) the Commonwelth Fund Commission issued multiple reports asserting a goverment-run health care plan could cut insurance premiums approximatly 20%. It asserts that private insurance spends 40% of claims costs on administrative expenses. The Sherlock Company was commissioned to do a study of private insurance costs in 2009 (the study most frequently quoted in the debate today dates from 1988).

The full report can be found at http://tinyurl.com/kjo9hq

I. Executive Summary
Health plan administrative expenses often are cited as consuming a significant share of health insurance premiums. Proponents of a public health insurance plan often state that Medicare is more efficient than private insurance companies. However, these statements are based on outdated data and misconceptions about private administrative expenses, especially in the small group and individual markets.

Recent reports claim that health plan administrative expenses in the individual and small employer markets can exceed 30%. However, these estimates are based on data from Hay-Huggins that is more than 20 years old (1988) — a time when most claims were paper-based and many electronic processes were in their infancy — and based on estimated, rather than actual, administrative costs for companies that no longer provide health insurance.
An independent analysis by Sherlock Company of health plan administrative costs finds that prior estimates do not reflect the actual administrative costs for Blue Cross and Blue Shield Plans and other major health plans. Based on our review of actual health plan administrative expenses, we find that:

• Private health plan administrative expenses are grossly overstated in previous reports.
Based on combined data from 36 health plans participating in our performance benchmarking studies in 2008 (2007 data) and other data, administrative expenses for all commercial products represented 9.18% of premiums. Administrative costs are 11.12% of premiums for the small group market and 16.35% of the individual market, amounts that are nearly one-half and in some cases nearly one-third of other estimates.

• Traditional Medicare performs only a fraction of the administrative functions of private health plans because it retains its original fee-for-service design and is, therefore, not comparable.
Private plans use their administrative costs to promote care coordination and wellness, reduce unnecessary utilization and aggressively combat fraud and abuse. No precise, generally accepted measure of Medicare administrative expenses exists that is comparable to private plans. Moreover, Medicare does not need to market its coverage, develop provider networks, negotiate provider rates or maintain capital. If the government were to create a public health option to compete with private plans in a health insurance exchange, it would have to take on many additional functions that are not part of Medicare’s administrative costs today, resulting in increased administrative costs.

• Private plans perform those administrative functions that Medicare performs at lower costs.
In comparing only those administrative functions that Medicare performs, private administrative costs are actually lower — $12.51 per member per month, compared to a $13.19 per member per month in traditional Medicare. Many of Medicare’s administrative functions are, in fact, performed by private administrative contractors.

• Comparing administrative expenses between Medicare beneficiaries and people under age 65 should consider the unique healthcare needs of seniors.
Medicare beneficiaries have higher costs per claim compared to private plan enrollees. This means that the service requirements are less per dollar of health benefit, and administrative expenses are less for Medicare simply by virtue of the higher cost per claim.

• Comparing administrative costs as a percentage of claims overstates the difference
between plans for small groups or individuals and large groups.
Instead of calculating administrative expenses as a percentage of premiums, which is the most conventional metric used for comparing administrative costs, Hay-Huggins and subsequent reports have expressed the values as a percentage of claims, which is very misleading. Because health insurance premiums pay for both health claim costs and administrative expenses, the Hay-Huggins approach, repeated by Lewin, of dividing administrative expenses by claims costs unrealistically magnifies the differences between administrative expense ratios.