Tuesday, August 4, 2015

How are drug prices set?

I watched an horrific story on The National last night. I was truly shocked, but not surprised.

The big Pharmas are setting different prices for different drugs, depending upon how much money a family has, where they live, and what their government can afford to pay. New Zealand, for example, has eschewed this drug, since they cannot negotiate a price they can afford.

Soliris, a drug which targets AHUS, for example. It costs the manufacturer about $60 to manufacture each bottle, and they charge $6700 per bottle to certain governments, and insurance companies, who pay for it for their patients. Once a government contracts with Alexion, their deal and the cost of the drugs must be kept silent. Some are granted the drug for humanitarian reasons, if they is nothing else that will offer them a cure. Others, such as the man in the video, who can maintain his health with daily dialysis, they refuse to grant him access to the drug.

The worst part of this is information from a researcher who tells us that most of the research leading up to the invention of this drug was done using taxpayer dollars, within R & D departments, in academic laboratories.
You are, of course, familiar with crowd sourcing initiatives for those unable to afford medical treatments? Big Pharmas are now hiring PR firms who teach desperate families how to exploit the media, and milk the public for more money. As one who is a shareholder, with many varied stocks, I am becoming more inclined to put my money under a mattress.

How pharmaceutical company Alexion set the price of the ...
A special drug for an extremely rare disease, Soliris costs about half a million dollars per patient, per year, for life. Why? The reasons for the price are locked in "the black box" of drug pricing that governments are seeking to crack open.
Alexion said drug pricing depends on a "unique decision-making framework" that takes into account "the rarity and severity of the disease, the absence of effective alternative treatments, indirect medical and social costs, and clinical data that demonstrate the impact of the drug on patients who desperately need it." 
Soliris is Alexion's only drug, but it's a blockbuster, earning revenues of more than $6 billion in just eight years, and making Alexion one of the fastest growing companies in the world.

Accessing healthcare isn't cheap, even in this country with universal healthcare. We are at visit #44 for prostate cancer. Our friend is far beyond visit #100.

  • Transportation to and from appointments
  • Parking at hospitals ($13  or $14/visit)
  • Meals out, while on the road for treatments
  • Drugs you take at home, rather than in a hospital, patients pay for.
  • Time off work, which is a dear cost in terms of time, energy, goodwill from your employer, even if you are on a salary, and not working on hourly wages.


Soliris is indicated for the treatment of patients with paroxysmal nocturnal hemoglobinuria (PNH) to reduce hemolysis. See full prescribing information.

How A $440,000 Drug Is Turning Alexion Into Biotech's New ...

Sep 5, 2012 - 10 Stocks to Buy Now ... Alexion shares are up 600% since the drug's.... by insurance,” says Biotechnology Stock Research's David Miller.

Wednesday, July 29, 2015

PART XLII: follow-up with the radiation oncologist

Trip # 42 review of the CT Scan and Bone Scan results, as well as the DEA and PSA tests.
It's been a journey.

Follow-up with Dr. K 

2:00 p.m. Left house, not 1:50!

They are cutting all of the poisonous wild parsnip, cow parsnip, and other weeds in the ditches. It's a darn good idea.
Saw a cool grass cutter. No photo, I was driving.
Here is one from an ad. 

We were off to Queensway-Carleton hospital. It's all part of Ottawa-Hospital. They told us they have to send non-Ottawa residents to a hospital nearer to us. We're in the western part of the city now!
Mysterious dude in Bells Corners! "Free bike taxi!"

3:10 arrived at the hospital. Checked in at the desk. I like to dress up some. It makes me feel better. I think anyone in a hospital needs to see nice textures and colours, and people who look after their appearance.

You have to love the people who donate for these buildings to be spruced up, creating wings, or building improvements. The Stiles and Bennet Atrium is an example. The Ottawa Firefighters helped pay for the waiting room.

If you are having radiation treatments, you can sign onto the computer and complete the ESAS on-line, to have it added to your records.

The ESAS is an excellent quickie self-administered reporting form for symptoms. There are always a variety of people, some dreadfully thin, others wearing head scarves, sitting in the waiting areas.

An important part of treatments is reporting symptoms in case the efficacy of the treatment plan goes awry.

I recommend this form for my clients, too. That and the PPS. It helps families to keep track when reporting back to physicians.

 Patients can report their ESAS scores electronically at many regional cancer centres using ISAAC. Find out more about ISAAC (Interactive Symptom Assessment and Collection)

3:32 We were taken into the room, not bad for a 3:30 appointment! Lee-ann, our nurse, checked the files to ensure that the test reports were in the hard copy of the file. We still have an issue locating the colonoscopy report done at the Ottawa Gastrointestinal Institute clinic.

The mistake with this particular test: it was done in a separate clinic last February, and the report was not faxed to our two doctors: the urologist, and our GP (Dr. KR) or to the wrong place.
In addition, post-procedure, the doctor who performed the colonoscopy (Dr. B) spoke to hubby in the recovery room, WITHOUT ME THERE, while JB was coming out of the anesthetic. That really peeved me off. Dr. B gave some verbal directions, which didn't make it to our urologist.

There is a lot of psychosocial and educational (e.g., nutritional) support for those confronting cancer. It's good to know people are talking about this.

3:50 in came our Dr. K. Hubby's gown says, "Please wash your hands" but our doctor says it's subliminal for him, he doesn't even see the message any more. He did wash his hands, though!

I had a bit of fatigue, I was thirsty and suddenly had some dizziness. Thankfully, I had my Stewart Park Festival mug with me and grabbed a spot of water from the tap. It's a light plastic, and really handy! We used it at the park with the girls last week!

Time for a peek. The doctor pulled the curtain, as if I hadn't seen any of this before!!! (Trip #42, right?!)
the curtain in iPad photo mode

After, we had a long sit with the physician, to determine treatment plans, options, and side effects. Another mistake: the colonoscopy report is still missing. We went to our GP after our last visit, two weeks ago, and asked the clerk to fax them to the urologist (Dr. C), and our radiation oncologist (this guy, Dr. K). Dr. K is going to demand a consult with the clinic's doctor who did the procedure. The system isn't broken, it just has a few cracks. In this case, blame a clerk, methinks.


The tests do not indicate that there is spread outside of the two lymph nodes. This is good. It's a matter of time, and then we'll do some anti-hormone therapy, which will slow it down.
The PSA test is down slightly. This is good, too.
Hubby's PSA test results
We asked the doctor for copies of the most recent tests: CT Scan, Bone scan, CEA, PSA. He said to go upstairs to medical records and ask for them, then they will print them. We would have to pay a fee. We'll just go back to the GP and get them. And we tracked down the mysterious colonoscopy report, two days later. It was negative for colon cancer. More good news.

4:23 we were done, the doctor spent a half hour with us. I could tell he was getting a bit antsy, but there were questions asked and answered! There is much to learn.
 We paid our $11 parking fee. Very few cars left in the parking lot. It was closing time!

5:30 at the pub for dinner. One seldom feels like cooking after these marathons. Home again to sleepy cats.
The CT Scan and Bone Scans didn't show any more spread, but there could be microcells anywhere. He has two enlarged mesorectal lymph nodes. JB's blood tests were OK. PSA hasn't risen too much. He needs to decide if he takes anti-androgens now or later. We are in to see his GP tomorrow for more discussions! Cats are exhausted with all this! They are helping with paperwork.

Wednesday, July 22, 2015


For event #41 hubby had to go by himself. We have the grandkids for a week. We have been available for last-minute cancellations for these tests booked in advance, which works well for us.

CT, or CAT scans, are special X-ray tests that produce cross-sectional images of the body using X-rays and a computer. CT scans are also referred to as computerized axial tomography.
A CT scan can be used to visualize nearly all parts of the body and is used to diagnose disease or injury as well as to plan medical, surgical or radiation treatment.
  • Diagnose muscle and bone disorders, such as bone tumors and fractures
  • Pinpoint the location of a tumor, infection or blood clot
  • Guide procedures such as surgery, biopsy and radiation therapy
  • Detect and monitor diseases and conditions such as cancer, heart disease, lung nodules and liver masses
  • Monitor the effectiveness of certain treatments, such as cancer treatment
 CT Scan #3 was at the Riverside Campus for Ottawa Hospital.

#2 was alone, too, since I had norovirus. Sigh.

This was Bone Scan #1.
It's a big hospital, with long halls!
 Since The Ottawa Hospital includes the Civic, the General and Riverside Campuses, we asked for the earliest appointments for these tests. Go to the website and print yourself off a map. It helps!
The Ottawa Hospital phoned us two days before, as has been the case with previous appointments.
Here is our list of info for the CT Scan:

  1. Go to hospital wing C1 - Radiology
  2. Drink 8 glasses of water the day before.
  3. Bring a list of your medications. (We keep this in our agendas.)
  4. The test itself will take 20 minutes. (A 90-minute drive, for 20 minutes!)

Saturday, July 18, 2015

PART XL: Bone Scan #3

#40 Bone Scan 

Two passing, one oncoming!
Friday, July 17th, we had medical appointment #XL and Bone Scan #4. (Using Roman Numerals is keeping me sharp! I loved teaching math!) It's been a long journey. We needed more diagnostic imaging, and were referred to Queensway-Carleton hospital. The process is complex.

 5:30 a.m. popped out of bed, I've been getting up early lately. Hubby always wakes 15 minutes before the alarm rings, he's just peculiar that way. He woke right on time today.

6:44 a.m. left house, lots of traffic as it's rush hour. Too many people passing.

 7:55 We went to the main desk, but we were supposed to be at Diagnostic Imaging reception. The volunteers weren't there, yet. The gift shop wasn't open, either!

Across the hall we went. The clerk was a card, and we joked. She asked if our address was on Pineglen. We said no, that was two houses ago! She had our new address on file, which we  confirmed. Files must cross-reference as she then asked: "And do you still have Jennifer?"
"Yes!" Everyone in the room giggled!
 "And is her phone # 705-762-XXXX?"
"No! That's Bala (where we were from 2004 - 2012)!" We got it all straightened out.

Off we went. Turn right, 2nd door on the left.

 8:00 in waiting room. Only one other patient. A young man, my daughter's age. He watched our antics, laughing with us.
WiFi access in the hospital makes it easier!

 I went for brekkies, Timmy Ho's is in all the hospitals. They also have some nice quiet rooms for prayer or meditation.

 When I came back hubby was gone. I obviously looked, and the nice young man said he popped out, too. We decided JB had gone into the room.  We chatted. He's from Timmons, with a wife looking after kids at home. He grew up here. We were joking about being positive. You sit, and wait.  He said, "It occurred to me, sometime ago, why we're called patients!"
We've met some wonderful patients in waiting rooms. We joke, giggle, and they like our traditional selfies!

 8:20 After an injection of radioactive iodine, we were dismissed at 8:20 and told to return at 10:45. What to do? What to do? I remembered Andrew Haydon Park from when we lived in Nepean (since amalgamated with Ottawa), and thought we might take a walk by the water. Peculiar to come to the city to escape the bugs and see the water!
We had bought an all-day pass, since we knew we'd hid the daily max, what with going in and out.
Do you pay by the hour, or get a day pass?
You do the math!
It was a lovely walk, and I grabbed lots of photos of birds and water.
After our walk, we went for a drive around the beautiful homes on Crystal Bay. My achillies tendon was giving me grief. We got some gas for the car and refreshments for us.

10:30 back in the waiting room. Hubby finished his book, and changed into the pants and gown.
My poison ivy attack.

11:05 the technician came for him. My back was so sore, sitting. No one else was in the small room. I did some leg stretched, read my magazine standing up, stretched my arms (sore from working on the dock).

Lots of secret peeps trained here.
11:55 He was done. Off we went. We decided to drive out of the city. There are several spots where we grab a meal.  I wasn't yet hungry.

We passed that wicked-looking secret facility on Perth Rd.

1:15 By the time we neared Perth, we thought Subway sandwiches for lunch, but I was exhausted. Hubby drove me home. I unwound. Puttered. Loved the cats, who missed us. There was a dead mouse in the living room. Bless their little hearts.

The town was crazy with tourists and the free music festival. Poor hubby!

3:00 p.m. JB came home with wine and roses, a pizza and subway sandwiches!

The florist asked what he'd done wrong, he said, "Nothing. It's what she's done right, taking care of me!" He arrived home, chipper as can be. After lunch, I had a nap. I woke at 5:30, which is very unusual, but I was exhausted.
He has a good heart!
Do you think Perth needs a ring road?