I have nothing wrong with accountants. They pay attention to the little details in numbers that I some how don't understand. I have an accountant I use to do my taxes and take care of my financial stuff. My husband has an MBA and he can explain all the financial stuff on a level that I need to understand.
I used to work for a company where each year when I had to present my budgets to accountants, they drew straws on who would have to deal with me. Because I wasn't enough of a numbers person for them. I know they are important. But they also can be too focused on numbers and not on people.
Now we have a problem. Big pharma companies are beginning to focus on their profits and not on creating better medications for patients. Why? Because now that the accountants are beginning to rule.
In the last few decades it has not been unusual for pharma companies, and others, to merge, move, and streamline themselves for financial reasons. Have a competitor? Buy him out, problem solved. Some one designed a good product? Buy them out and take advantage of their technology.
But now big pharma companies are taking it a step farther. They are letting their accountants take over and make BIG financial decisions to take better care of their bottom line. First they are moving to countries with lower tax rates. Then they will lose a lot of staff and potentially stifle innovation as they hire new scientists who start over in development, but they will save a lot of money over all. And example of this is Pfizer which is buying Allergan.
"Pfizer is the largest drug maker in the United States, but after striking a deal on Monday to buy Allergan, the company is on the verge of becoming Irish.
For shareholders, this may be their lucky charm. After the merger, Pfizer will be able to shift its legal headquarters from New York to Dublin and pay lower taxes, which should bolster its bottom line.
But in the process, scientists are likely to lose their jobs, innovation may suffer, and consumers could pay more for Pfizer medicines."
To me this deal sounds like only the accountants and share holders will be happy. So I must ask: What about the patients?
Maybe its time for the politicians to step forward and say the US will negotiate with pharmaceutical companies for their medications, only if they are based in the US, paying US taxes, and hiring American citizens to work there? Just an idea.
Friday, November 27, 2015
Thursday, November 26, 2015
Inaccurate Medical Tests
With new medical research, medical 'tests' are springing up all over to test for genetic defects in unborn babies, best treatments for medical conditions, and risks of certain diseases, among other issues. The problem is not all these tests are accurate and are leading to unnecessary surgeries, putting patients on unneeded medications, and raising medical costs.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
Wednesday, November 25, 2015
Spoon Theory (Or How Many Spoons Is That Worth To Me?)
Do you know about the spoon theory? No, its not something you learned in high school physics and since forgot. Its about life with a chronic illness. Christine Miserandino over at "But You Don't Look Sick".
This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):
If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc. Each task is a spoon.
But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.
This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.
I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.
I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.
Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.
This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):
If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc. Each task is a spoon.
But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.
This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.
I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.
I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.
Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.
Tuesday, November 24, 2015
Keep your information to yourself
Every time you sign up for another store's shopping program, where you are enticed by the discounts and special offers, you are actually giving away your information. I don't consider it as much of a problem at a clothing store or the grocery, but when its the pharmacy, that becomes another story.
CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.
"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.
At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."
The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.
Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.
"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."
Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.
The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."
So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.
CVS, Walgreens, and RiteAid offer their rewards programs and they entice you to use the card because you get special prices on products and other financial gains. When you pay for your prescriptions along with shampoo and bandaids or provide personal data points such as body weight, blood sugar, etc, it becomes another story.
"Walgreens this month launched a new smartphone app that customers can sync up wirelessly with their blood glucose and blood pressure monitors so they can feed their personal health information directly into the chain’s data system in exchange for discounts.
At CVS, you can get $5 back for every 10 prescription refills — if you waive your right to health care privacy protected under the federal health law known as HIPAA. And Rite Aid is experimenting with a service that other retailers are using to collect tons of data: special lockers that you can use to charge your cell phone for free, if you’ll give up your phone number, insurance costs, and shopping preferences."
The key words in there are "if you waive your right to health care privacy protected under the federal health law known as HIPAA". I bet you didn't even realize that you waived your HIPAA protection.
Seriously? I had no idea I was waiving my HIPAA right to privacy. Until I read this article I did not know that was going on.
"When asked how Walgreens was using all that health data, company spokeswoman Mailee Garcia said the company “does not sell personally identifiable information to third parties,” but may sell de-identified information."
Garcia said Walgreens is not currently using health data to market to the customers who provide it. But the app’s privacy policy explicitly states that Walgreens may use customer data to personalize advertising. The store can also combine data entered into the health app with personal information collected by other companies to create a more robust profile of individual customers.
The policy also gives Walgreens the right to change its privacy terms at any time and says customer data will be sold as an asset if Walgreens is acquired by another company."
So now that I know all this, I will not be swiping my card when I pay for prescriptions. I will pay for prescriptions at the pharmacy without my card and then pay for other items to get the discounts with my card. Seriously its not worth my privacy about prescriptions. If it wasn't the way to get the sale prices (and I am secretly very cheap and never pay retail unless I absolutely have to), I would ditch my card all together.
Monday, November 23, 2015
The blind leading the sighted
I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.
I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.
They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.
This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.
In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?
In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.
How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?
I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.
They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.
This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.
In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?
In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.
How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?
Sunday, November 22, 2015
Prescription freakiness
I got this email on Friday:
"The following prescription(s) received in Order #"XXXXXXXXXXX on 11/19/2015 cannot be filled.
We can't fill one or more of your prescriptions because the drug was not available, and we have no approved alternative from your prescriber."
So helpful. I had no idea what this was for. Which medication, which doctor, which ailment.
So first I called the specialty mail order pharmacy (because some of my medications are 'special') and I can't look up those prescriptions on line. After dealing with the 'helpful' automated attended for far too long and two phone calls, I ended up with someone who told me it wasn't in that part of the specialty program. She tried to transfer me to the regular mail order department but I ended up in telephone limbo.
So I hung up and made call #3. The woman I spoke with put me on hold to research it and then when she picked the call back up, somehow I got disconnected.
So I hung up and made call #4. The man I spoke with told me that they couldn't fill it because the prescription came in without a medication on it. Very weird.
Even weirder was that it came in from a nurse practitioner in the dermatology department on Thursday where I had an appointment with another NP.
The more I think about this, the freakier it is. How did a prescription get to a pharmacy for me when it wasn't for me? I can only think that this someone didn't realize that they were logged into my account on their computer when they went to enter a prescription for someone else.
This is not a good thing. I will call them tomorrow to discuss this. There is no excuse for this. I know people are busy but when it is dealing with patients and medications, they need to double check what they are doing and make sure they are looking at the correct patient.
Just think if you were in the OR and they were looking at someone else's chart?
"The following prescription(s) received in Order #"XXXXXXXXXXX on 11/19/2015 cannot be filled.
We can't fill one or more of your prescriptions because the drug was not available, and we have no approved alternative from your prescriber."
So helpful. I had no idea what this was for. Which medication, which doctor, which ailment.
So first I called the specialty mail order pharmacy (because some of my medications are 'special') and I can't look up those prescriptions on line. After dealing with the 'helpful' automated attended for far too long and two phone calls, I ended up with someone who told me it wasn't in that part of the specialty program. She tried to transfer me to the regular mail order department but I ended up in telephone limbo.
So I hung up and made call #3. The woman I spoke with put me on hold to research it and then when she picked the call back up, somehow I got disconnected.
So I hung up and made call #4. The man I spoke with told me that they couldn't fill it because the prescription came in without a medication on it. Very weird.
Even weirder was that it came in from a nurse practitioner in the dermatology department on Thursday where I had an appointment with another NP.
The more I think about this, the freakier it is. How did a prescription get to a pharmacy for me when it wasn't for me? I can only think that this someone didn't realize that they were logged into my account on their computer when they went to enter a prescription for someone else.
This is not a good thing. I will call them tomorrow to discuss this. There is no excuse for this. I know people are busy but when it is dealing with patients and medications, they need to double check what they are doing and make sure they are looking at the correct patient.
Just think if you were in the OR and they were looking at someone else's chart?
Saturday, November 21, 2015
Animal trainers not doctors
Okay, this is getting to be a bit too much. I'm sorry but cancer detection by animals? Well, birds too.
This all seems to be going on in the UK. First of all, pigeons are being trained to read breast cancer imaging to diagnose breast cancer. Yes you read that right. Pigeons. You know the 'rats with wings' (as I call them) that populate many cities.
"Pigeons, with training, did just as well as humans in a study testing their ability to distinguish cancerous from healthy breast tissue samples."
I am so happy to hear that we no longer need radiologists to read our mammograms for breast cancer diagnoses. Instead of 3 years of medical school and four years of a radiology residency, we can have pigeons trained for a few weeks who can spend their lives reading mammograms.
"After two weeks of training, the pigeons reached a level of 85% accuracy. Because they successfully identified cancerous tissue from images they had not seen before, the researchers ruled out rote-learning of the images as an explanation."
Talk about a birdbrain.
Next we have dogs who sniff out cancer. I have heard of this before. We have Lucy's story. She failed guide dog school so her owners thought they should try medical detection instead.
"For the next seven years, Lucy learned to sniff out bladder, kidney and prostate cancer, and was even used in a study. Over the years, she has been able to detect cancer correctly more than 95% of the time. That's better than some lab tests used to diagnose cancer.
Now, Lucy is part of one of the largest clinical trials of canine cancer detection. A British organization, Medical Detection Dogs, has eight dogs sniff out 3,000 urine samples from National Health Service patients to see whether they can discern who has cancer and who doesn't."
Is this a good use of our medical research dollars? I am not so sure. I know people claim their dogs have sniffed out their cancer or stay very close when they are sick but again I do not think a dog is good substitute for a doctor. This research may make us think we need more animal trainers instead of doctors.
You think I make this stuff up? You can read about it the pigeons and the dogs.
This all seems to be going on in the UK. First of all, pigeons are being trained to read breast cancer imaging to diagnose breast cancer. Yes you read that right. Pigeons. You know the 'rats with wings' (as I call them) that populate many cities.
"Pigeons, with training, did just as well as humans in a study testing their ability to distinguish cancerous from healthy breast tissue samples."
I am so happy to hear that we no longer need radiologists to read our mammograms for breast cancer diagnoses. Instead of 3 years of medical school and four years of a radiology residency, we can have pigeons trained for a few weeks who can spend their lives reading mammograms.
"After two weeks of training, the pigeons reached a level of 85% accuracy. Because they successfully identified cancerous tissue from images they had not seen before, the researchers ruled out rote-learning of the images as an explanation."
Talk about a birdbrain.
Next we have dogs who sniff out cancer. I have heard of this before. We have Lucy's story. She failed guide dog school so her owners thought they should try medical detection instead.
"For the next seven years, Lucy learned to sniff out bladder, kidney and prostate cancer, and was even used in a study. Over the years, she has been able to detect cancer correctly more than 95% of the time. That's better than some lab tests used to diagnose cancer.
Now, Lucy is part of one of the largest clinical trials of canine cancer detection. A British organization, Medical Detection Dogs, has eight dogs sniff out 3,000 urine samples from National Health Service patients to see whether they can discern who has cancer and who doesn't."
Is this a good use of our medical research dollars? I am not so sure. I know people claim their dogs have sniffed out their cancer or stay very close when they are sick but again I do not think a dog is good substitute for a doctor. This research may make us think we need more animal trainers instead of doctors.
You think I make this stuff up? You can read about it the pigeons and the dogs.
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