Not All Rheumatologists Are Created Equal

In the field of medicine, specialists are deemed to be experts within their field. As a nurse I learned to expect that the specialists I worked with pretty much agreed with one another that xyz set of symptoms meant the patient had abc disease and there was a 123 treatment plan. When a particular specialist had a day off and one of their colleagues were covering I had no doubt that the treatment plan outlined by the patient’s specialist would be the same treatment plan that the covering specialist would agree with and follow. Patients with serious illness would often ask for a second opinion and might end up preferring one specialists bedside manner over another, but little differed in the actual treatment most of the time. The exception being a rare disease where there may not be a proven treatment plan.

I’m in my fourth year of autoimmune illness. In this time I’ve seen three rheumatologists. Each of them had a difference of opinion on my diagnoses and my treatment plan.  I’ve never experienced such varying medical opinions before in my nursing career!  Not all rheumatologists are created equal.  Rheumatology is a specialty field where there is a huge gray zone which leaves a lot of room for interpretation by the physician. The doctor can’t just look at one thing like a blood test or a xray and say, “Yes, you have rheumatoid arthritis”. A rheumatologist has to look at a multitude of factors, many of which can’t be measured by medical science. The doctor has to be willing to look at the whole and not a part.

Currently, in the field of rheumatology, about 20-30% of patients diagnosed with RA test negative for the Rheumatoid Factor and are considered “sero-negative”per the Arthritis Association. For years the presence on the rheumatoid factor on lab results was the definitive piece of the puzzle that confirmed you have RA, but current data shows that some people who test positive actual do not have RA.  Even x-rays alone are not enough data for a physician to arrive at a diagnosis of RA unless you already have bone deformities. In fact, in the early stages of rheumatoid disease, the radiologist reading a routine x-ray may mis-classify changes seen as osteoarthritis. To diagnosis a patient correctly with Rheumatoid Arthritis, it takes a doctor who is willing to spend the time on those initial appointments to collect your medical history, conduct a thorough medical examination and listen to what you are saying. In the current medical climate of booking multiple appointments in a time slot and not taking the detailed time it takes for diagnosis, many patients are misdiagnosed.

My best advice to anyone seeking a rheumatologist for the is to do your homework. Check to see if the physician is board certified in rheumatology. Most rheumatologists are internal medicine physicians with a sub-specialty of rheumatology. To be board certified they have to meet certain clinical guidelines of number of hours trained in rheumatology and they must pass the rheumatology examination. If they are a fellow of the American College of Rheumatology that means that they have paid membership to seek training and keep up with new developments in the field with others of the same specialty, but is not the same as being board certified. You can also call your state medical licensing board to ask if your physicians medical license is in good standing which may reveal if your physician has lost a malpractice suit, has restrictions on his/her license, or any disciplinary action. You can also check online sources such as vitals.com or healthgrades.com to see how patients rate the physician. In addition, be prepared for your appointment with a list of your current medication, a list of your current physicians and their demographic information, a list of your medical history that includes your allergies, surgical history, history of hospitalizations. Most of all, if you don’t feel the diagnosis you have been given feels right or you feel uncertain about the treatment plan or the physicians doesn’t listen to you or makes your feel they don’t have time for you please seek out another rheumatologist for a different patient/doctor relationship fit or a different opinion.

I’m currently seeking out my 4th rheumatologist. It is taxing but I’m paying for medical care and I deserve to make sure I have a physician who is interested in me, has time for me, and listens in addition to proving to me that they are a good clinician. As a nurse, I never understood patients who stayed with a doctor they didn’t like or felt dismissed them. In trying to advocate for patients, I came up with a great analogy that brings home the point that medical care is a service you pay for. I would ask my patient, “If you had a car that kept breaking down after taking it to your mechanic several times and that mechanic wouldn’t listen to you and kept charging you for services, would you keep taking your car to that mechanic?” The answer was usually a resounding, “no” and I’d point out then why do you value your car more than your body? Doctors are human and they are occasionally wrong. Don’t be afraid to exercise your patient rights and hire a physician that is qualified, with whom you have a rapport, and most importantly is someone you can trust.

Finacial Aspect of Chronic Illness

There is an aspect of chronic illness that isn’t talked about much, but is very taxing to the person suffering physically and that is the financial toll that being sick takes on one. The stress that financial burdens carry can contribute to exacerbation of  illness. At one time during the last six months I found myself making monthly payments to eleven different health care providers which encompassed hospitals, physician offices, ER doctors, radiologists, laboratories, and medical equipment companies. It can be very overwhelming when you feel so bad physically and find yourself being bogged down financially with threat of collection agencies and possible law suits.

In September 2011, I filed for social security disability. This wasn’t an easy undertaking and I weighed the decision heavily. In the end, I realized that I could not work in any capacity doing meaningful work as a nurse or otherwise. My rheumatologist agreed that my disease had progressed to the point that I needed assistance, but warned me that it would be a difficult transition because the number of people who have abused the disability system have caused the guidelines for approval difficult to meet.

Filing for disability was a very scary for me as a single person. You can’t earn any income while waiting for the disability application to be considered. I had a 401 K account I’d rolled over to an IRA years ago and I ended up tapping that for a set monthly allowance minus the penalty for early withdrawal and taxes. This small nest egg sustained me financially while I waited for disability to come through. I would have been forced to move in with relatives and sell all my things if I had not used that IRA account. Maintaining my independence was very important to me.  My first application was denied, but my second application was approved in April 2012 with a disability date of Nov 1, 2011. I was very ignorant about the process and hired a law firm that just deals with disability from the beginning to help me which ended up being another financial burden because it was a con. For those of you who are considering filing for disability, you do not need the representation of a lawyer unless you’re application has been denied. The social security people are not your enemies. In fact, they assisted me more than the law firm I hired and I never ran into a single person that I thought was mean, trying to take advantage of me, or withholding information. It was the law firm that was secretive, manipulative, and failed to do their job. This company failed to tell me that even if your application is approved on the first round, there is a six month waiting period before you can draw your first check. Back pay doesn’t start until that 6 month period has been met. I had been counting on the back pay I thought I would get from the date of my first application to pay medical bills and when I learned that it wasn’t coming I was more than upset, I was in financial distress. No one told me that there was 24 month waiting period from the date of disability until you are eligible for medicare either so my medical expenses were coming out of my pocket.

I had six months of medical bills I was making small payments on thinking I’d pay off the balances when I got my back pay from social security. My first check from social security was deposited in my account in May 2012, six months after my initial application so I did not qualify for back pay. COBRA health insurance coverage from my employer was going to be $700/month which was impossible to pay on a single, limited income. I found myself uninsured, but I thought it would be okay because once I got disability I could go on Medicare. What I didn’t know was there is a 24 month waiting period from the date of disability until you are eligible for Medicare. This meant I needed to carry private care insurance. I was able to qualify for Oklahoma’s High Risk Pool health insurance, but it is far from ideal. I have a $2000 deductible and once that is met the insurance only pays 80% of the bill. I’ve accumulated a lot of medical debt, so much so that I’ve considered filling bankruptcy once I am on medicare later this year. The income on disability for me is under $1500 per month. It’s hard for a single person to live on that amount of money. By the time the rent and utilities are paid, medicines are purchased there is little left at the end of the month.

In addition to the financial strain, it feels like a part time job just keeping up with what has been billed medically and what the insurance has paid. I would recommend to anyone who has chronic illness and sees multiple physicians or are hospitalized frequently to always get a detailed statement. I have found numerous billing errors and hidden charges. One of the most outrageous hidden charges was an additional $75 for a Saturday office visit. When the Saturday appointment was made I was not told of the extra fee and it was not posted in the office that there was a $75 charge for a Saturday visit in addition to the routine office charge. I could write a blog on the billing errors I’ve found on the detailed billing statements. I’ve learned to keep a log of the date/time of my office visit and a note about what was done during the visit or what the doctor and I discussed. I have a file for each physician I see and these notes go in that file along with receipts and insurance statements for that facility. This log book has helped me many times when I’ve been falsely billed for services that were not rendered.

Do not ever loose sight that a health care facility is a business. They cut staffing and play around with the billing codes so they can make the most profit while delivering standard medical care. Before you know it, a disease you don’t even have will show up on your medical record because a coding clerk entered a billing code for maximum reimbursement for a lesser symptom. That may mean the insurance paid more money, but I was still left with 20% of those hyped up charges because of fudged billing codes. Because of staffing cuts, the office staff is more likely to make errors in your billing. In addition, the medical staff is short so they may not have time to mark your billing sheet properly. Always ask for a copy of this medical billing sheet that you will usually hand to the receptionist at the end of your visit. It is from this sheet that the billing clerk enters codes into the computer system for maximum return on their claims. They don’t always get it right. This might sound like a taxing job and it for the most part, but when you are on a limited income with no safety net every dollar counts. I don’t have a wealthy family that can bail me out. When hospitalized, ask for a detailed statement as soon as you get your first bill. Review the charges carefully and decide if this was reflective of the care you received in the hospital. Most of the billing issues I have disputed are from the medical offices. Keep in mind that unless your doctor owns the business, he or she is just an employee and has no idea what is going on with the business end of things so it doesn’t serve you well to be angry with your physician. You should make your complaint with the office manager.

Helpful tips in review:

1. When filing for disability, make sure you have six months of disposable income to support you and your family at the least. If you don’t feel that you have a clear-cut case for disability, the process can extend up to two years while filing and re-filing your claims.
2. Understand that if you are awarded disability, you will not draw a check until 6 months have passed from your first application. For example, if you filed Jan 1st and received an award letter March 1st you still would not get a check until June 1st. On the other hand if you filed Jan 1st and did not received an award letter until September 1st you would be eligible for 2 months of back pay.
3. If awarded disability, you are not eligible for Medicare for 24 months following your disability date. Your award letter should give you the date that they consider you became disabled. It is not always the date of your application.
4. Ask for detailed billing statements from hospital visits and review them to see if the charges match the care that you received. You might find a charge for a bed pan when you were able to get up and go to the bathroom on your own and never required one. You could be erroneously charged for a medication that you never taken. It is in your best interest to go through the billing statement and discuss any discrepancies with the business office in a timely manner.
5. If you can not pay the balance on your medical bills, do not let them sit unopened in a stack because you are upset. Call the business office of the health care facility and see if you meet their charity guidelines. Some people on disability income do draw so little that they fall in this range. There is an universal range of income for charity, meaning each facility has its own guidelines. Just because you didn’t meet guidelines at one facility doesn’t mean you won’t meet guidelines at the next, so it never hurts to ask. Also do not agree to paying more than you can afford. It is their job to pressure you into making the largest payment possible. If $5/month is all you can do, it’s all you can do. If it’s not acceptable to the facility then make those five dollar per month payments anyway and if they turn you over to a collections agency so be it. When you are financially strapped there isn’t a lot you can do about it, but if you agree to pay more than you can afford and fail to make those payments it’s hard to argue in court, especially if you signed a payment agreement.
6. Always ask for a copy of the billing sheet at the physicians office. This is usually the sheet that the doctor or nurse will ask you to hand to the receptionist on your way out. Now that a lot of offices are computerized, you might have to ask the receptionist to print this out for you when you are setting up your next appointment. I always tuck this billing charge sheet and a note about the date, time, and what happened in my visit into a file for that physician. I also look for my insurance statement on visits and when those come in, I staple it to that visit and compare my receipt of what I paid for the visit to what the insurance company says I owe. This has helped me immensely in disputing false charges.
7. If you do find yourself dealing with a collection agency, you can negotiate. Often, they will work with you if you are sincere and honestly tell them that you are chronically ill and on a limited income. Granted there are some really pushy people out there that want their commission on hauling in your debt, but there are also some companies that realize recovering a portion of the balance is better than nothing at all.

I haven’t found a way yet for the financial stress of chronic illness not to get to have an impact. The fact is I owe more than I make. I am holding on for Nov 1, 2013 when I am eligible for Medicare. Even then, money will be withheld from my disability check for Medicare but it is nothing like the $300 premium I pay now and I will not have a deductible to meet. I think finally being able to drop the private insurance and go to Medicare will give me some breathing room in the budget. I hope the insight I’ve provided will help someone else out there who is struggling financially. Knowing the facts and having a plan helps diminish stress when you find yourself in any crisis.