Treatment. Yeah, that’s been interesting. My insurance company denied the PA for me to continue with a medicine that has worked quite well for five years.  I am appealing.  Meanwhile, my doctor’s office has provided samples.  It’s a little weird to be handed $7K worth of medicine samples to tide me over during the appeal process.

The summer has been crazy.  Those whose blogs I subscribe to have filled my inbox with updated posts, but I have rarely clicked through to comment (although I mean to).

My two younger sons continue to participate in sports. This involved 83 events in May and June, plus practices. In July I collapsed from exhaustion — which I count as a victory. In the months before my diagnosis, I pretty much had to be home by noon because I was wiped out by then. Keeping on the go like I did is a testament to the effectiveness of my treatment.  When I was first diagnosed, there is no way my kids could have participated in sports.  Now they can.

In addition to all the sports, spring saw my older daughter fundraising.  She left the country July 1 for a training program to do medical missions work. She will go to Kolkata next and will spend two months in India, followed by one month in Bangladesh.  She is scheduled to be home for Christmas.

My younger daughter leaves next week for college. She’s planning to earn an exercise science degree and then apply to grad school to become a physical therapist.  We’ve been doing all the normal stuff one does to get a child ready to leave for college.

My oldest is about to begin his senior year of college (still a 4.0 engineering student).  He had an internship in Houston over the summer, but called one weekend and said that Christmas was too far away; he wanted to come for a weekend visit.  On that visit, he brought a very nice young lady for us to meet. Guess my kids are growing up.

We will be down to only two kids in the house this fall. The older one has developed an intense weight training workout and spent a couple hundred dollars of his own hard-earned money on some basketball skill-drills in an effort to improve his game.  Both boys are playing sports this fall before basketball begins in winter, too.  Fortunately the older one got his driver’s license over the summer, so I won’t have quite so many chauffeuring duties.

I saw my rheumatologist, and she is ambivalent about my official diagnosis.  Despite the dermatologist’s report, she sees no reason to switch my diagnosis from RA to PsA.  Her philosophy is that my diagnosis can be whatever will get my medicine approved by insurance, and it doesn’t really matter what label is used.

In the beginning, when I first was referred to rheum, I had follow-up appointments every two months.  In time, those follow-ups have gotten further and further apart.  Now I don’t have to go back for six months.  There was a time that I would have been appalled at seeing a doctor twice a year.  Now I’m thrilled that it’s only two instead of six.  It’s amazing how perspective can change.

Oh, the aggravation!

Changing insurance is every bit as frustrating as changing doctors.  My plan, unlike many, does not renew at the turn of the new year.  Dutifully I contacted the new insurer to make sure there would not be any problems filling my prescriptions at the pharmacy.  If prior authorizations were needed, I wanted to make sure all the paperwork got done in a timely manner.

What a pleasant surprise to hear that none of my meds would need a PA.  That turned to disaster when I actually went to the pharmacy and was told that they couldn’t fill the prescription because it did require a pre-auth.

My pharmacist is wonderful and goes above and beyond, fighting for her patients.  She phoned my insurance company and was told that they had no record of my calling them.  Really?  I’d called them three times by that point.  I immediately stepped away from the counter and called the insurance company myself.  Why on earth would they tell my pharmacist that I’m a liar?  Turns out that since I phoned before the policy took effect, their computer would not allow them to document anything.  While I was trying to figure out 1) why they had no record of my call, and 2) why they told me I didn’t need a PA if I really did, my pharmacist managed to talk the insurer into a one-time override so that I could continue taking my medicine while they processed the paperwork.  Words cannot describe my gratitude.

Fast forward one month.  I return to the pharmacy to refill all my prescriptions. They have not heard back from the insurance company so they can’t fill my cimzia.  Returning home sans biologic, I emailed my doctor’s office to find out when they sent my insurer the required information.  Monday morning, I then contacted my insurer to find out how long they take to process the paperwork.  They claim that they haven’t received any information. None.  Now, my last insurer tried that, but my doctor’s office was able to show me their fax confirmation which made the insurer magically find the paperwork after all.  Not this time.  Four hours later the head nurse called me back (I don’t think she’s even in my doctor’s office – hospital systems are so frustrating).  She apologized and has no idea why nobody had done the paperwork.  It’s not like it should take hours of sifting through chart notes.  All they have to do is copy information off the form that was submitted to my last insurance company!

After a long talk with the nurse, it turns out that whoever in my doctor’s office was supposed to take care of the pre-auth paperwork is in trouble.  The head nurse promised to fill out my paperwork herself today and fax it to the insurer, as well as phone both the insurance company and the pharmacy to try to grease the wheels and make things happen faster. I’m not sure what good it does to phone the pharmacy because they can’t fill the prescription until the pre-auth shows up (unless I pay cash, which I’ve done with less expensive meds, but I can’t do that with a biologic).

I can understand pre-auth paperwork taking a day or two.  If it were my job to process it, I wouldn’t drop everything to turn the paperwork around immediately. I’d probably collect all the requests in a folder and sit down to do them at the end of the day.  It wouldn’t take long, though, because I would have the information ready.  Think about it.  When the doctor first prescribes a biologic, or when a decision is made to switch to a different one, it is assumed that a pre-auth will be required.  Insurers don’t ask for your shoe size or other irrelevant info.  They want to know what meds have already been tried. They want dates.  They want proof that $50 meds don’t work before they pony up thousands of dollars.  Patients’ files already have a list of the date each med was started (and stopped).  Although it’s probably a hassle to complete paperwork for the insurance companies, it’s not difficult.  A high school dropout should be able to do it.  What I can’t understand is why, in a full month, nobody in my rheumy’s office managed to get the paperwork done so that I can get my medicine.

Okay, I take that back.  New plan.  If it were my job to do pre-auth paperwork, when the doctor wrote the prescription, I’d look at the patient’s chart to determine their insurance company, then grab the appropriate form and explain that due to the cost of the med, the insurance company would require extra paperwork.  I’d print the patient’s Rx history and task the patient with filling out the PA form.

There are a variety of ways to expedite the paperwork.  I don’t think it should take a month. I don’t think it should require the patient to place multiple calls and spend two hours on the phone.  I sincerely hope that the head nurse is able to inspire my doctor’s staff to handle things in a more timely manner.  If not, I won’t wait until retirement to go elsewhere.  I like my doctor, but incompetent staff just might drive me to find a new doctor.

Should We Worry About Ebola in the West?

In 1976, in a small village near the Ebola River in Zaire, an unusual disease was identified.  Symptoms initially were similar to the flu:  sudden fever, muscle pain, headache, weakness, and sore throat.  Later symptoms included nausea, vomiting, and diarrhea.  Some patients also experienced bleeding.  It was a horrible disease, and 280 of the 318 victims died.  The disease was named Ebola.

That same year, the identical symptoms showed up in Sudan, killing 151 of the 284 people infected.  Scientists discovered that these two outbreaks were caused by two different species of Ebolavirus.

Ebola TaxonomySince then, three other species have been identified.  The Ebolavirus identified in Reston, Virginia appears to be asymptomatic in humans.  Not so with the species discovered in the Tai Forest of the Ivory Coast.  The Ebolavirus discovered in Bundibugyo, Uganda, like the species discovered in Zaire and Sudan, can be fatal.


However, those who claim that Ebola Virus Disease (EVD)1 is 30%-90% deadly are playing fast and loose with the numbers.  Obviously there is a huge difference between 30% and 90%, and it behooves us to be more precise and truthful.  The mortality rate varies greatly depending on the species of Ebolavirus.  According to WHO, prior to this year, 78% of people infected with Ebolavirus-Zaire died, while none of the people infected with the Ebolavirus-Tai Forest or Ebolavirus-Reston died.  The mortality rate for those who contract Ebolavirus-Sudan is about 54%, and 32% for those infected with Ebolavirus-Bundibugyo.

Ebola Mortality

Doctors have been working on a vaccine, but none have yet been approved.  There is also progress being made on an experimental drug that might be used for treatment in the future. Meanwhile, doctors have discovered that supportive measures can make a big difference in patient outcomes.  As seen from this year’s statistics, providing IV fluids and oxygen, maintaining electrolyte balance and blood pressure, and treating complicating infections leads to many more survivors.  Despite the horror of the recent outbreak of Ebolavirus in areas of Africa that have never before known to be afflicted, the statistics look better than they have in the past.


Known natural reservoirs (hosts) of Ebolavirus are fruit bats.  They spread the disease, it is believed, through saliva and feces.  In particular, the bats eat part of a piece of fruit but leave the rest.  Wild animals (most notably primates such as monkeys) then eat the leftover fruit and thus contract the disease.  People, then, come in contact with infected animals and themselves become infected.  In Africa, eating “bush meat” is a risk factor for Ebolavirus, as is direct contact with infected animals or people.  Outbreaks have also occurred among those who attended funerals of victims (do not touch the deceased).  Symptoms begin within 2-21 days (usually 8-10) of exposure.

Unlike some other viruses, Ebola does not appear to be airborne.  Direct contact is required.  Family members who care for a sick loved one are the most likely victims. Healthcare workers are also at risk if they do not wear protective clothing.  Those who do not come in contact with an infected person or animal will not be infected.

Recently an American with Ebola was transported back to the United States for treatment, and there has been an outcry.  People have heard that Ebola is deadly; it’s even been classified as a possible weapon in germ warfare.  Therefore, these frightened people conclude, nobody with a known case of Ebola should receive state-of-the-art treatment in the U.S.

Their logic escapes me.  We permit free travel.  Any tourist or businessman could contract Ebola while in Africa and return home before symptoms begin.  Once symptoms occur, that person would expose family members and medical personnel.  Any number of people could become ill before an accurate diagnosis is made.  This is not hypothetical.  Consider Patrick Sawyer.  Mr. Sawyer visited Liberia and was on his way home, but stopped off in Nigeria where he fell ill and infected others before he died.  It is just by chance that he became sick while in Nigeria instead of on the airplane or after arriving home.  In another case, less-publicized, we consider a man currently in a New York hospital.  He became ill after returning home from a visit to Africa, and is in isolation.  Anyone can become infected while travelling and take the new disease home to unsuspecting family and friends.

Dr. Brantly and Mrs. Writebol, on the other hand, are not bringing a disease home and passing it along to anyone.  They were transported in a special airplane for the purpose of not spreading the disease.    After landing, Dr. Brantly was then moved to the hospital in a special vehicle designed to prevent contamination of others.  Finally, at the hospital he is carefully quarantined so that nobody else will become ill.  Mrs. Writebol is currently in transit, but the same precautions are planned.  The United States is far less likely to succumb to an Ebola outbreak introduced by Dr. Brantly or Mrs. Writebol than from miscellaneous travelers who return home unaware that they’ve brought along a new virus as a souvenir.

This is not idle speculation.  In 1994, a scientist contracted Ebola while performing an autopsy on a monkey.  That patient was treated in Switzerland, yet there was no outbreak in Switzerland.  The fact is that medical personnel in first world countries take precautions that aren’t as easy to take in many parts of Africa.  It is unlikely to become a problem outside the African continent.

Two years ago there was an Ebola outbreak in Uganda. At the time, CNN raise the question, “Could the Ebola outbreak spread to the U.S.?”  The answer then was that it’s possible but unlikely.  Today the answer is the same.  Ebolavirus is spread through direct contact, making it much more difficult to spread than influenza or the common cold.  People must directly touch an infected person’s skin, clothes, linens, or body fluids to contract the disease.  Use some common sense.  Don’t pick up fruit off the forest floor and eat it.  Don’t play with monkeys (dead or alive).  Don’t eat bush meat.  And, if you absolutely must touch other people’s body fluids, employ a protective barrier.

Ebola In Africa

Edit to add: the virus responsible for the outbreak in West Africa is 97% similar to the Zaire strain, but due to the differences is being called a sixth strain: Guinea.  It appears that the first victim was a two-year-old in the forests of Guinea, and that the disease was then spread by a travelling health-care worker.  High mortality rates in Guinea were due to initial lack of recognition of the disease.


1 formerly called Ebola Hemorrhagic Fever (EHF)
2 Zaire’s name changed to Democratic Republic of the Congo; it’s the same country