Carnival of MS Bloggers #17 - Insurance Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"Cash, Credit, or Co-Pay?"

Coming to us from a London adventure in the land of free health care, Nina who blogs at Planning the Unpredictable discusses Insurance.

Since going blind in May, my insurance has paid out the following:

• $1,500 for the Eye doctor
• $1,000 for the Neuro doctor
• $2,500 for the MRI
• $1,000 for the Neuro doctor
• $500 for the Neuro doctor
• $6,000 for three months of Copaxone
• $4,500 for the Spinal MRI
• $400 for the IV Steroids
• $1,000 for the Neuro Doctor
• $500 for the Neuro Doctor

Total: $12,900 Medical Care and $6000 Drug Coverage

Nina's Out-of-Pocket: $200

[ed. Seriously? These were the negotiated and paid rates?]

Without insurance, this might have happened:

• Cash out my retirement
• Declare bankruptcy (isn’t medical bills one of the main reasons people declare bankruptcy in the US?)
• Try to qualify for a state run program which wouldn’t allow me to see a qualified doctor
• Ignore it and not receive any care
• Get diagnosed but unable to afford Copaxone

My life is NOT worth more than anyone else's, but since I have insurance I get treated like it is. I am insanely lucky. I was diagnosed in a week after going blind. I had no problems with insurance. Out of pocket, it has cost me less than 200 dollars. Again, INSANELY LUCKY.

For more discussion on the contrasting healthcare systems in the U.S. versus the U.K., read the rest of Nina's post.

Next up, Lisa of Brass and Ivory explains that  

The MS Relapse is Not So Inexpensive.

Since the relapse this spring, I have finally received all the Explanation of Benefits related to the three doctor's visits, 5-day round of IV Solumedrol, and a trip through the MRI tube.

• $710 Three Neuro Visits
• $3825 Solumedrol Treatment
• $6000 MRI Brain/Cervical

Total Billed: $10,535

• $5285 Insurance Paid
• $4550 PPO Discount
• $700 Lisa (out-of-pocket)

Total Paid: $5,985

Who ever said MS was inexpensive? Nobody I know.

On a different note, Lisa tells us that she just received notice of yet another large rate increase for her insurance premiums.

The chart on the right shows that the greatest increases were seen in the following two-year time spans: 2002-2004 (44%) and 2006-2008 (36%).

As it stands, Lisa's policy now costs $3780 each year, still without coverage for dental, vision, or MS meds.

It's no wonder that individuals with special health considerations are getting married to gain access to insurance coverage or worse getting divorced.

Just read this NYT article.

Health Benefits Inspire Rush to Marry, or Divorce
By KEVIN SACK
Published: August 13, 2008
With health insurance out of reach for many, obtaining coverage is factoring into the decision for more couples.

With that, this concludes the 17th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 28, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 26, 2008.

Thank you.
Comments for this post.

"Don't Listen to Hear, But Listen for Understanding"

Seriously, what was I thinking?  That patients discussing a particular drug therapy would want additional pertinent information?  That a thread on a discussion board was for sharing ideas and knowledge?

I'm sad.  I'm blown away.  I'm hurt.  I'm shocked (but shouldn't be).

I need to dust the dirt from my feet as I move on and accept that Patients Like Me is not necessarily made up of, well, patients like me.

"Helping through Sharing" was the phrase used to describe PLM, but what was shared was negativity and accusations which didn't help anyone.

Forgive me while I attempt to "eschew the verbiage" and provide a reminder for myself regarding meaningful conversation.  The following comes from Scarboro Missions.

Guidelines for Listening to Others

These guidelines are designed to facilitate healthy dialogue and deep listening and to create a safe space for meaningful conversation on all levels:

WHEN YOU ARE LISTENING, SUSPEND ASSUMPTIONS - What we assume is often invisible to us. We assume that others have had the same experiences that we have, and that is how we listen to them. Learn to recognize assumptions by noticing when you get upset or annoyed by something someone else is saying. You may be making an assumption. Let it be - suspend it - and resume listening for understanding of the other.

WHEN YOU ARE SPEAKING, EXPRESS YOUR PERSONAL RESPONSE - informed by your tradition, beliefs and practices as you have interpreted them in your life. Speak for yourself. Use "I' language. Take ownership of what you say. Speak from your heart. Notice how often the phrases "We all", "of course", "everyone says", "you know", come into your conversation. The only person you can truly speak for is yourself.

LISTEN WITHOUT JUDGMENT - The purpose of dialogue is to come to an understanding of the other, not to determine whether they are good, bad, right or wrong. If you are sitting there thinking: 'That's good", 'That's bad", "I like that" "I don't like that", then you are having a conversation in your own mind, rather than listening to the speaker. Simply notice when you do this, and return to being present with the speaker.

SUSPEND STATUS - Everyone is an equal partner in the inquiry. There is no seniority or hierarchy. All are colleagues with a mutual quest for insight and clarity. You are each an expert in your life. That is what you bring to the dialogue process.

HONOUR CONFIDENTIALITY - Leave the names of participants in the room so if you share stories or ideas, no one's identity will be revealed. Create a safe space for self-expression.

LISTEN FOR UNDERSTANDING, NOT TO AGREE WITH OR BELIEVE - You do not have to agree with or believe anything that is said. Your job is to listen for understanding.

ASK CLARIFYING OR OPEN-ENDED QUESTIONS to assist your understanding and to explore assumptions.

HONOUR SILENCE AND TIME FOR REFLECTION - Notice what wants to be said rather than what you want to say.

ONE PERSON SPEAKS AT A TIME - Pay attention to the flow of the conversation. Notice what patterns emerge from the group. Make sure that each person has an opportunity to speak, while knowing that no one is required to speak.

The New York Times highlights Rheumatoid Arthritis

These are some take-aways from the article which is shown below.

1. Encourage clinical trial participation and highlight RA patient (2002 article)  

2. Fear mongering of disability and premature death from lack of treatment

3. Early use of costly biologic drugs leading to cost-savings (Abbott)  

4. Combination use of biologic drugs and methotrexate: Humira (Abbott) and Enbrel (Wyeth)  

5. $16,000-18,000 is not expensive, if you consider the cost of disability, disease, and quality of life

6. Physicians need to refer early so patients can start treatment early

7. Fish oil and exercise are encouraged

Information regarding Rheumatoid Arthritis from Johns Hopkins.

Note to MSers: You CANNOT use the biologic drugs in fighting RA due to increased occurrence of demyelinating diseases seen. 

Living Better With Rheumatoid Arthritis
By JANE E. BRODY
Published: August 11, 2008

Alan Moore was 52 years old, teaching statistics at the University of Wyoming, playing the violin in the university’s symphony and accompanying soloists on the piano when his health took a nosedive in April 2001.

“I felt like I had the flu,” Mr. Moore recalled in an interview last month. “I was very weak and fatigued. I had extreme pain and swelling in a lot of my joints. I was in agony when I got up in the morning, so stiff I had to shuffle to the bathroom. I couldn’t peel a banana, turn the key in the ignition or even pull the tab of a tea bag. My wife, Cindy, had to help me with the simplest of tasks. Needless to say, I couldn’t play the violin or piano or use the computer.”

Doctors diagnosed it as rheumatoid arthritis.

“And I thought that my life as I knew it was over,” said Mr. Moore, now 59, of Laramie, Wyo.

But by enrolling in a clinical trial of one of the drugs and drug combinations that are revolutionizing the treatment of the disease, Mr. Moore got his life back.

Rheumatoid arthritis is the world’s most common autoimmune disease, striking up to 1 in 100 in the course of a lifetime. It is most often diagnosed in people ages 30 to 60 but it can occur at any time, including childhood.

As with other autoimmune diseases, women are three to four times likelier than men to develop rheumatoid arthritis. About 80 percent of Caucasians with the disease have a genetic marker, a gene sequence in the HLA-D region of chromosome 6 that is found in only about 35 percent of the general population.

The disease causes chronic joint inflammation and progressive destruction of the cartilage at the ends of bones, which can result in an inability to use the affected joints. Other effects include fatigue, malaise, anemia and damage to organs throughout the body, including the cardiovascular system.

Untreated, 20 to 30 percent of people become permanently disabled within three to five years of diagnosis. Life expectancy may be reduced by as much as 15 years, with half of patients succumbing to cardiovascular disease.

A Therapeutic Revolution

Doctors traditionally treated the symptoms of rheumatoid arthritis, usually with anti-inflammatory and pain-relieving medications. But the underlying destruction of tissues continued, leading to chronic disability and premature death.

The goal today is suppression of the disease and prevention of progressive joint destruction by treating patients early with synthetic or biologic agents called disease-modifying antirheumatic drugs.

Though he did not know it at the time, Mr. Moore was randomly assigned to the study group that every two weeks self-injected a biologically derived drug called Humira, which acts to block a protein involved in the inflammation associated with rheumatoid arthritis. Humira is one of six federally approved biologic treatments for the disease. Three other biologic remedies are nearing approval by the Food and Drug Administration.

“Within days my symptoms declined to nearly zero,” Mr. Moore said, “and I’ve had no symptoms since.” He has continued the injections of Humira and participates in a registry of patients to help assess the drug’s long-term benefits and potential risks.

Combining Treatments

The costly biologic drugs are often used in combination with much cheaper synthetic disease-modifying drugs taken orally, like methotrexate. In some cases, oral medications are all that patients need to keep symptoms and joint destruction under control.

But well-designed clinical trials have typically shown that in patients facing moderate to severe disease, combining the treatments often results in fewer symptoms and less destruction of joints, especially if therapy begins early.

In a study published July 16 in The Lancet, researchers in Leeds, England, reported that among 542 patients randomly assigned to receive either methotrexate alone or in combination with Enbrel, another biologic agent, those receiving the combination were almost twice as likely to become symptom free and more likely to show no X-ray signs of progressive joint destruction a year later.

In a commentary with the Lancet report, Dr. Joel M. Kremer, a rheumatologist at Albany Medical College, said it was important to consider the long-term consequences and costs of the disease when deciding how much to spend on therapy.

“Most of the biologic agents cost in the range of $16,000 to $18,000 a year, whereas the oral medications cost only about a tenth that,” Dr. Kremer said in an interview.

But, he added, inadequately treated rheumatoid arthritis typically leads to a need for multiple joint replacements, lost productivity, lost tax revenue and a greatly diminished quality of life, as well as an increased risk of life-threatening infections and cardiovascular disease.

“Most patients diagnosed at age 45 will be disabled in five or six years,” Dr. Kremer said. “You have to consider what it costs to fix a bridge against what it will cost when the bridge collapses.”

Before the use of disease-modifying drugs, direct medical costs from rheumatoid arthritis were estimated at $5.5 billion, and that did not include the indirect costs of lost wages and productivity, the need for custodial care and the emotional and social consequences of chronic disability.

A Tailored Approach

While not everyone with rheumatoid arthritis responds to the new treatments as vividly as Mr. Moore did, many large studies have shown there is no longer any reason for pessimism about the diagnosis. But it is vitally important to begin treatment early.

The recent therapeutic developments, Dr. Kremer said, mean doctors in general practice need to remain alert to symptoms of the disease in its early stages and quickly refer patients to rheumatologists who can confirm the diagnosis and prescribe up-to-date treatment before irreparable damage to joints occurs. Treatment is most effective if begun within one year after symptoms appear.

There is no one treatment approach that works for everyone. Rather, studies have indicated that treatment should be tailored to individual patients: the nature and extent of their disease, their other health issues and how they respond to various therapies.

Dr. Kremer said many patients could be started on a single, low-cost drug like methotrexate, as long as their condition was closely monitored and the treatment adjusted if there are signs of progressive disease.

Regular exercise and physical and occupational therapy, along with medication, can help patients maintain function. In addition to antirheumatic drugs to reduce inflammation, Dr. Kremer recommends fish oil at a daily dose of 2 grams of EPA and DHA — about six capsules as they are currently formulated.

"I used to be...."

On Saturday, I had a freelance gig and encountered another horn player whom I had not seen for quite awhile.

He had been absent from playing for five months this year due to a herniated disk in his cervical spine. I asked him all sorts of questions about what the herniated disk felt like, what treatments he underwent, and most importantly - did he need to have surgery?

It was amazing to hear how long it actually took for his HMO to bump-up his treatment regimen. Three long months before something stronger than Ibuprofen was recommended for the excruciating pain. Ouch!! Eventually he was given steroids and narcotics before being sent to consult with a spinal surgeon.

“Prednisone is nasty stuff,” he says.

“I agree!! Any time I’ve had to use steroids, I curse them and thank them at the same time.”

Our conversation eventually came around to - “I have Multiple Sclerosis.”

“I didn’t know that. I’m so sorry,” he says. “Did you know that ‘GS’ has MS?”

“What? No way!! I haven’t seen her in forever.”

“Yeah. She was the top freelancer in town before it just became too difficult. Eight or nine years ago she was struggling so much that she simply stopped playing.”

Damn. Another USED TO BE...

One morning after I was officially diagnosed, a woman at the swimming pool introduced herself to me. She has MS too.

“I used to be a cellist, but I can’t control my left hand any longer.”

A friend of mine who is a school teacher told me...

“I used to perform much more, but now I don’t have the endurance.”

When thinking of famous people with Multiple Sclerosis, I am drawn to Jacqueline du Pre, the extraordinary cellist whose career was cut short by MS.

Read More..

As for me, I used to be much more shy, reserved, and private. MS has taken that from me, for which I am truly thankful.

It's Gonna Be a Great Day

Sometimes when I wake up in the morning and the sun is shining brightly through my white curtains, I just know that it’s going to be a great day.

I stretch long in the bed, rotate my legs left and right, reach high in the air towards the ceiling, give out a lion yawn, relax....

Then I start to get up out of bed. Whoops!

That first step is wobbly and stiff. I reach for the footboard on the bed. Take a few more steps.

Ok. Getting the flow now.

First, I must negotiate the items collecting dust and cat fur in the hallway on the way to the bathroom. Then, I.....

Here is where YOU click over and check out my new diggs at Health Central.

Yep, you heard me right. I'll be blogging next to our friend Mandy of MS Maze who has been a prominent feature at Health Central since last fall.

So please do come over and let me know you've arrived. I am not giving up my blog here but will be adding twice a week posts at MultipleSclerosisCentral.com in addition to all the cool stuff that Brass and Ivory and the Carnival of MS Bloggers have to offer.

Health Wonk Review is Up!! and Questcor's CFO is Resigning

Bob Laszewski hosts this week's Health Wonk Review at the Health Care Policy and Marketplace Review.

Bob highlights my posts regarding Questcor's 1410% increase in the price of H.P. Acthar Gel and the Senate Joint Economic Committee hearing which I attended on July 24, 2008.

In a related note, on July 31, 2008 (only 7 days following the JEC hearing and the release of 2nd quarter earnings, and 4 quarters of reported earnings since the "new strategy" was implemented), CFO George Stuart enters into a transition agreement with Questcor.  Basically, he is leaving.  

A reason given for his desire to seek other employment is that Stuart has been commuting from Southern California (San Diego) to Northern California (Union City which is 20 miles north of San Jose Airport) for the past three years.  American has 32 and Southwest has 65 non-stop flights from San Jose to San Diego.  Both airlines offer round-trip fares of $120 (including taxes), even with the recent increased cost of flying, for the 85-minute flight.

As a reminder, George Stuart was the first Questcor insider to sell a substantial amount of stock after the run-up last fall.  He was also the luckiest one in that he managed to sell at the high of $6.00, the highest stock price of any insider selling before or since.

Pursuant to the transition agreement, Stuart has agreed to continue working in his current capacity until Questcor hires a new Chief Financial Officer (or until December 31, 2008) and for six months thereafter as a part-time employee (working from home) to assist with the transition.  During the six month transition period, Stuart will receive continued compensation of $17,333.33 per month, continuation of benefits and continued stock option vesting. The agreement also provides for severance payout at the end of Stuart's part-time employment in the amount of $26,000 plus $20,000 for each month remaining on his six (6) month term of part-time employment at the end of such employment. 

So that's a $104,000 part-time salary plus benefits for working from home for six months, or if he's not needed to work part-time during those six months, it's $120,000 plus benefits.  Both scenarios end with an extra $26,000.  But Stuart will not receive a cash bonus for 2008 which would have been 45% of his $260,000 salary (=$117,000).  Thus the possibility of $120,000 while not working seems pretty close to that forfeited bonus.

As a final note, I should mention that George Stuart is/was the final employee remaining (I believe) who was brought to Questcor by the previous CEO James Fares in 2005.  I find it interesting that last year Fares announced his departure one week after Questcor announced they had received a "non-approval" letter from the FDA for the addition of Infantile Spasm to the label for H.P. Acthar Gel.  And now a transition plan has been arranged between George Stuart and Questcor only one week after their financial case was discussed at a Senate JEC hearing.

Coincidence?

QUESTCOR ANNOUNCES CFO TRANSITION PLAN
Union City, CA – August 5, 2008 — Questcor Pharmaceuticals, Inc. (NASDAQ: QCOR), announced today that George Stuart will be transitioning from his position as Questcor’s Senior Vice President of Finance and Chief Financial Officer once a successor joins the Company. For the past three years, Mr. Stuart has been commuting from Southern California to the Company’s headquarters in Northern California, and it is his desire to remain closer to home. Mr. Stuart, 45, joined Questcor in 2005.

“I deeply appreciate George’s willingness to remain with our company until his successor comes on board, as well as to continue on a part-time basis for six months thereafter to ensure a smooth transition,” said Don M. Bailey, President and Chief Executive Officer of Questcor. 

“George has made many contributions to Questcor and played a key role in supporting the rapid turnaround and growth of the Company. We appreciate George’s efforts in the transition process, and wish him the best as he pursues other interests.”

“The entire Questcor team has been extremely supportive of my decision to seek new career opportunities closer to my home and family in San Diego,” said Mr. Stuart. “I look forward to working with Don and my successor during the transition process and remain very excited about the future and potential of Questcor.”

Strange coincidence indeed.