Living With Multiple Sclerosis: The Cost of Chronic Illness

Lisa:

Thanks for taking the time and effort involved in detailing your expenses. I wish I could share my expenses but I haven't kept track. I did have a brain/spine MRI earlier this year and believe my share of the costs were around $500. I do not take any of the CRAB drugs and my prescription costs run around $30/month. I have monthly blood tests and that's $40+.

With kids at home, someone is always headed to the dentist, doctor, optometrist and so I do always give thought as to whether a doctor's visit is absolutely necessary.

As far as I know, I have a $1 million lifetime benefit -- meaning that once insurance costs hit that number, I'm booted off the insurance program. On the positive side, once my family costs (the costs we have to pay, not including co-pays or prescriptions) surpass $3,000 for the year, insurance picks up 100 percent of the rest for the year.

I have great insurance and have no complaints.

My worries are that I will lose my job (through my illness) and will be a burden on my family because of my health costs. I'm hoping my children will be safely launched into the world, with their own careers, before this could become an issue. I would not want the cost of my health care to take anything away from them.

Thanks for doing such a complete job identifying your medical costs.  I am retired but do not have company health insurance.  My costs are very similar to yours including a relapse related MRI, with and without dye of my brain, my thorasic and cervical spine after falling and breaking my ankle.   Medicare and AARP supplemental paid the entire cost, including the surgery.  Medicare can't continue this level of coverage for the aging baby boomers.  I have Medicare part B, AARP supplemental (#7) and AARP RX coverage costing about $525/mo.  I'm taking it one day at a time.

I can't help but think what the costs will be under "ObamaCare" and if you would even have access to the quality of care you are able to get now as expensive as it is now...

Lisa, thank you for this eye opening article.  I count my blessings every time I see a doctor or have a procedure done because I have excellent coverage, thanks to my former employer. When I went on SS Disability and started receiving Medicare, I was also covered by the insurance plan that my former employer gives to its retired employees.  Over the years some of the specific benefits have changed, and for a while my prescription coverage was only for generic meds so I either had to pay or not take those medications that were.  That has changed now and I pay a relatively small co-payment for my prescriptions, usually between $15 and $35 per.  It adds up each month but at least I can take all of the prescriptions I have been given.

I now can see any doctor I need to, as long as he or she accepts Medicare. I mentioned in a previous Post that I see a neurologist, pain specialist, urologist, neuro-pharmacologist, pulmonologist, internist, and podiatrist, and other specialists as needed.  I see all these doctors because of the range of symptoms I have from MS and my other diagnosed chronic conditions. I am thankful that I no longer have to get referrals or see only in-network doctors, and I hope it stays this way.  

While I cannot complain about my current insurance plan and hope that it stays this way, I do recognize that I am very fortunate and there are many people out there not so fortunate with their plans, or who have no insurance at all.  I think there are major problems with the insurance system as we know it, specifically because of the number of families, especially children, with no coverage.  

There are other issues though, including the continued decrease in reimbursement to doctors.  In your Post you itemize how much the insurance company discounts the doctors' bills.  I have had situations where a specialist has submitted a bill of several hundred dollars and receives back from my insurance less than $100.  I blame this high amount of discounting for some doctors increasing their fees in an effort to be reimbursed what they consider a reasonable amount.  Another practice  that many doctors have adopted is limiting the time spent with any patient; they allocate fifteen minutes per patient so they can see more patients to make the money they once did or perceive they need.  I don't know how much doctors should make but the fact is their income is being cut by these discounted payments and they are doing what they can to make more. 

 Another new development is that of Concierge Doctors, and I don't mean the one on TV. I received a glossy brochure from a vascular surgeon I saw for my legs offering Concierge Medicine for $2500 a year.  For this membership fee I would be entitled to guaranteed appointments with no limit on the amount of time my doctor would spend with me.  The brochure did say he would remain my doctor even if I didn't pay this fee, however I might not get in to see the doctor right away and I will only be allotted 15 minutes, regardless of why I was there.  I had heard of this new practice but was speechless when I received such a notice from one of my doctors. Isn't the issue of discounting doctors' bills important enough to be studied during health care reform? If we are concerned that the padding of bills is a large part of the cost of Medicare, shouldn't we include doctors in an effort to find out why this is happening and see if it can be fixed?  Wouldn't this all be part of a true reform effort?

I believe we need Insurance Reform though I am concerned about what will actually come out of the current effort; will it be better than what we have?  Will competition really drive down costs?  Are pharmaceuticals going to look to trim costs so insurance companies can afford to cove medicines?  The government plan is only one option that will be given to the public so will it be able to fund itself?  

I am concerned that my wonderful insurance plan, which has to cost my former employer a lot of money, will be cut or changed to meet the minimum requirements of any new government option.  I pay about $40 a month toward my premium, although this has gone up and down over the years, depending on the policy. This may be selfish of me, but I don't know how I would manage my health care without a policy such as the one I now have.

One last comment.  I don't view the current effort to be true health care reform. Instead I see it as insurance reform, which I believe is critical but there is very little being discussed about the quality of care and all that means, from access to care and educating doctors to palliative care for terminal patients.  

Thanks again for your insightful article.  I apologize for this being so long, however you stirred up some thoughts I wanted to share. 

So sorry, Lisa, about all the $$ you've been paying when you got that variety of medical visits/treatments.  I'm only 55yrs., but I've been on Medicare awhile now & I'm spoiled because I pay very little.  I wish everyone with a disease could be on Medicare. Yes, I have a $250 deductible at the begeinning of the year, but the only thing I pay a significant amount for is the dentist.  Thanks for the info. on the Cost of Chronic Illness. 

If any of you are in the Greater Delaware Valley Chapter area of the National MS Society, we can help with our Health Insurance Initiative Project. Visit http://main.nationalmssociety.org/hiip