The CDC is issuing a fresh warning this month about hepatitis C in Baby Boomers (those born between 1945 and 1965) as infection rates rise in this population. According to Medline Plus, the hepatitis C virus has infected 1 out of every 30 Baby Boomers ("Test All Baby Boomers for Hepatitis C: CDC").
Hepatitis C is spread through contact with infected blood or, more rarely, through sexual contact. Left untreated, it can cause cirrhosis of the liver and liver cancer, and death rates from the infection are rising. Roughly 3.2 million Americans are infected with hepatitis C, according to the CDC's public fact sheet on the disease. Often, however, people are unaware that they are infected until the disease has already damaged the liver. The virus can be detected with blood tests.
Vaccines are available to prevent hepatitis A, an acute liver infection which usually resolves on its own, and hepatitis B, an acute or chronic liver infection which can lead to liver problems. There is no vaccine for hepatitis C, but there are several treatments currently available with a high cure rate.
Because the disease affects such a large population, and the CDC is now recommending widespread testing for it, the incentives are high for pharmaceutical companies to develop more effective
treatments for hepatitis C with fewer side effects than the current
options. Sales of drugs used to suppress viruses rose nine percent in 2011, according to an article by Noah Pines on the website Medical Marketing and Media. One analyst predicts that treatments currently being used for hepatitis C and those under development could ultimately net $10 billion in sales five years from now, Pines wrote ("MM&M Therapeutic Focus: Infectious Diseases").
Monday, August 27, 2012
Monday, July 30, 2012
Dancing NHS Doctors
I've never been too interested in the Opening Ceremonies of the Olympics, because I want to get to the athletics, which always impress me. But I watched the ceremony from London this year out of curiosity, and I was pleasantly surprised.
One part of Danny Boyle's loud and quirky vision of England in the opening ceremony especially struck me: his depiction of the U.K.'s National Health Service as an institution worth celebrating. Those were actual NHS doctors and nurses, swing dancing around a sea of children in beds in the middle of the stadium. It's hard to imagine American doctors and nurses acting so gleeful, as the pressure to reduce costs collides with the complex needs of an increasingly unhealthy population and the uncertainties about how health care reform will play out here. Meanwhile, states such as Oklahoma, for example, are fighting against government-mandated health insurance and turning down grants to help implement it.
The single-payer NHS in the U.K., designed to address inequities in health care, especially among the poor, was first instituted in 1948. Today, the service, paid for through taxes and individual fees, covers all British citizens with health care, dental care, and limited vision care. Infant mortality statistics, often used to rate the health of a country, demonstrate the success of the NHS. In 2011, infant mortality in the U.K. was 4.6 per 1,000 live births, according to the CIA's World Factbook estimate, while the U.S. rate is 6 per 1,000 live births (for comparison, Afghanistan had the highest rate in 2011, at 121.6 per 1,000 live births; Monaco had the lowest, 1.8 per 1,000 live births). Life expectancy at birth, another key health indicator, is estimated at 80.2 years in the United Kingdom and 78.5 years in the U.S.
Will our own health care system ever be celebrated on an international stage? It's hard to imagine that happening right now, but I hope we will reach that point some day.
One part of Danny Boyle's loud and quirky vision of England in the opening ceremony especially struck me: his depiction of the U.K.'s National Health Service as an institution worth celebrating. Those were actual NHS doctors and nurses, swing dancing around a sea of children in beds in the middle of the stadium. It's hard to imagine American doctors and nurses acting so gleeful, as the pressure to reduce costs collides with the complex needs of an increasingly unhealthy population and the uncertainties about how health care reform will play out here. Meanwhile, states such as Oklahoma, for example, are fighting against government-mandated health insurance and turning down grants to help implement it.
The single-payer NHS in the U.K., designed to address inequities in health care, especially among the poor, was first instituted in 1948. Today, the service, paid for through taxes and individual fees, covers all British citizens with health care, dental care, and limited vision care. Infant mortality statistics, often used to rate the health of a country, demonstrate the success of the NHS. In 2011, infant mortality in the U.K. was 4.6 per 1,000 live births, according to the CIA's World Factbook estimate, while the U.S. rate is 6 per 1,000 live births (for comparison, Afghanistan had the highest rate in 2011, at 121.6 per 1,000 live births; Monaco had the lowest, 1.8 per 1,000 live births). Life expectancy at birth, another key health indicator, is estimated at 80.2 years in the United Kingdom and 78.5 years in the U.S.
Will our own health care system ever be celebrated on an international stage? It's hard to imagine that happening right now, but I hope we will reach that point some day.
Saturday, June 30, 2012
Avoiding Magnet Injuries
I've been thinking about magnet injuries ever since I read a story about summer injuries in kids by a Washington Post columnist. Buckyballs, the magnetic toy marketed to office workers, have caused numerous injuries to children who got their hands on them and swallowed the small, pea-sized magnets. The magnets can clamp together across internal tissues, causing intestinal blockages.
These injuries are not just limited to young children. Fox31 news in Denver reported that a thirteen-year-old girl put several Buckyballs on her tongue to pretend that she had pierced it, swallowed them, and had to have emergency surgery to remove them from her intestines.
Buckyballs' manufacturer, Maxfield and Oberton, clearly states on its website that Buckyballs are not children's toys and are dangerous to children. But childhood injuries from Buckyballs persist.
The CDC has also reported injuries and deaths in children who swallowed magnets dislodged from children's toys or embedded in small toys. In one of the cases in the CDC report, the magnet-embedded toy in question sounds suspiciously like Valtech Magna-Tiles, a current favorite toy in my own household.
In most magnet-injury stories, a child swallows magnets from a toy intended for, and owned by, an older child or adult family member. Who, then, is responsible for preventing these injuries?
When I buy a present for a friend's child, I try to find something that will be safe for any younger siblings in the household to use as well. I know how easily these toys can fall into younger hands (and how sneaky the younger siblings can be when they want to play with a toy not intended for them).
No matter how safe the environment, though, a child or a teen can get into trouble pretty quickly. And we can't supervise our children every moment of every day. It's better to to talk with children early and often about what behavior is safe and what is not, and when to tell an adult about unsafe behavior that they do or see. This, ideally, will help them avoid injuries and make better choices throughout their childhood.
These injuries are not just limited to young children. Fox31 news in Denver reported that a thirteen-year-old girl put several Buckyballs on her tongue to pretend that she had pierced it, swallowed them, and had to have emergency surgery to remove them from her intestines.
Buckyballs' manufacturer, Maxfield and Oberton, clearly states on its website that Buckyballs are not children's toys and are dangerous to children. But childhood injuries from Buckyballs persist.
The CDC has also reported injuries and deaths in children who swallowed magnets dislodged from children's toys or embedded in small toys. In one of the cases in the CDC report, the magnet-embedded toy in question sounds suspiciously like Valtech Magna-Tiles, a current favorite toy in my own household.
In most magnet-injury stories, a child swallows magnets from a toy intended for, and owned by, an older child or adult family member. Who, then, is responsible for preventing these injuries?
When I buy a present for a friend's child, I try to find something that will be safe for any younger siblings in the household to use as well. I know how easily these toys can fall into younger hands (and how sneaky the younger siblings can be when they want to play with a toy not intended for them).
No matter how safe the environment, though, a child or a teen can get into trouble pretty quickly. And we can't supervise our children every moment of every day. It's better to to talk with children early and often about what behavior is safe and what is not, and when to tell an adult about unsafe behavior that they do or see. This, ideally, will help them avoid injuries and make better choices throughout their childhood.
Friday, May 25, 2012
Hidden costs are bad for business
Since we live in an old house, I've hired a lot of contractors in my time. The first step, of course, is getting an estimate for the work; the second step (after I recover from sticker shock) is discussing what to add or drop from the estimate to meet my needs and my budget. I would never hire a contractor and say "just bill me when it's done." I need to know how much it will cost me, and the estimate needs to be correct.
Alas, this is not the model that some doctors follow. I was reminded of this recently when my daughter had a minor medical problem. I asked my pediatrician to take a look, but her office referred me to a specialist instead. At the first visit with the specialist, he wrote a prescription for a medication that cost $200 (I found out later at the pharmacy), then went on to bill us $191 (after insurance kicked in) for the visit. When I called his office requesting a cheaper medication option, he recommended using a $20 over-the-counter treatment off-label.
At the follow-up visit, the receptionist asked me whether I'd like to pay the bill for the first visit. No I would not, I said, because we had just received the bill a few days earlier and had not yet sat down to pay our bills for the month. If my ire was apparent, at least my daughter learned a valuable lesson: how to say no.
During the five-minute follow-up visit, I told the specialist that I was not comfortable using a treatment off-label, ignoring the bold warnings on the box. I stopped the treatment. He insisted that the off-label treatment he recommended was safe, then billed us another $191 for his time.
The saga ended at last when we saw my daughter's pediatrician for a yearly checkup a few weeks later. She recommended an alternative, $15 on-label over-the-counter treatment, which worked like a charm.
Ultimately, we were out $400 - more than we budget for out-of-pocket health care costs each month - to treat a problem that could be cured for $15. Had I known what it would cost at the outset, I would have held out for a (much cheaper) appointment with my pediatrician, or gone online to the fabulous Mayo Clinic Health Information site to diagnose and treat it myself.
Health care is a business, and we are the customers. Yet it doesn't always feel that way. The specialist never told me what the medication or the visits might cost me, or asked whether I was willing to use a treatment off-label, or asked my daughter how she felt about the treatment.
He made good money off of my family. But, like any business that doesn't put customers first, he lost any potential long-term revenue from us. We won't be back.
Alas, this is not the model that some doctors follow. I was reminded of this recently when my daughter had a minor medical problem. I asked my pediatrician to take a look, but her office referred me to a specialist instead. At the first visit with the specialist, he wrote a prescription for a medication that cost $200 (I found out later at the pharmacy), then went on to bill us $191 (after insurance kicked in) for the visit. When I called his office requesting a cheaper medication option, he recommended using a $20 over-the-counter treatment off-label.
At the follow-up visit, the receptionist asked me whether I'd like to pay the bill for the first visit. No I would not, I said, because we had just received the bill a few days earlier and had not yet sat down to pay our bills for the month. If my ire was apparent, at least my daughter learned a valuable lesson: how to say no.
During the five-minute follow-up visit, I told the specialist that I was not comfortable using a treatment off-label, ignoring the bold warnings on the box. I stopped the treatment. He insisted that the off-label treatment he recommended was safe, then billed us another $191 for his time.
The saga ended at last when we saw my daughter's pediatrician for a yearly checkup a few weeks later. She recommended an alternative, $15 on-label over-the-counter treatment, which worked like a charm.
Ultimately, we were out $400 - more than we budget for out-of-pocket health care costs each month - to treat a problem that could be cured for $15. Had I known what it would cost at the outset, I would have held out for a (much cheaper) appointment with my pediatrician, or gone online to the fabulous Mayo Clinic Health Information site to diagnose and treat it myself.
Health care is a business, and we are the customers. Yet it doesn't always feel that way. The specialist never told me what the medication or the visits might cost me, or asked whether I was willing to use a treatment off-label, or asked my daughter how she felt about the treatment.
He made good money off of my family. But, like any business that doesn't put customers first, he lost any potential long-term revenue from us. We won't be back.
Friday, April 20, 2012
How safe is that health app? A Q&A with Happtique (Part II)
Today, I discuss
who is responsible for keeping health apps from harming you, in Part
II of my Q&A with Paul Nerger, Senior Technology Advisor for the mobile
health application management company Happtique. (Part I explained who uses and develops health apps).
How are health apps regulated
to ensure that they are safe and accurate (both stand-alone apps and those that
connect to a medical device)?
There are guidelines that have been proposed by the Food and Drug
Administration (FDA) for the approval of some apps; we estimate that this will
be no more than 20% of the apps that are out there. These will be classified as
Type I (non-invasive), Type II (semi-invasive), and Type III (invasive), and
each has its own approval criteria. Type I is a self registration while the
other categories require clinical trials to prove that they do no harm and are
effective. [Information about how the FDA defines mobile medical applications
is available
online.]
But what about the other 80%? That is what our customers have been
asking us. If there is a bogus app within this category, the Federal Trade
Commission (FTC) has shown that they are willing to exercise their power to
have it pulled off the market using "false advertising" as the
rationale. [Mashable includes a health app in a list of app developers that the FTC prosecuted in 2011]. But this is also a very small percentage.
In response to this, we've come up with a Blue Ribbon Panel that
is made up of a leading physician, a leading nurse, a leading medical technologist,
and a leading patient advocate to develop a protocol for the certification of
apps as being medically sound within their category. They are currently
drafting the process and protocols that will be followed to do this
certification. Once they are done, we will put in place a mechanism to allow
developers to upload their apps for certification and to receive feedback on
what they can do to improve their apps to meet the criteria. Once an app is
certified, they will be granted a license to use a "trust mark" for
the promotion of their apps. This mark will signal to both clinicians as well
as patients that this app is safe and sound.
This is a big job but it is one that needs to be done and we are
in hopes of having something out in about 4 months.
How secure is the
digital medical information collected via health apps? What security measures
protect this digital medical information?
Private health information that is shared with your physician or
any other healthcare provider is covered under the privacy aspects of the Healthcare Insurance Portability and
Accountability Act (HIPAA). There are a number of technical requirements
that an app developer must ensure if they fall within the HIPAA domain. As part
of our certification process, we will examine how the app functions, and if it
falls within the HIPAA privacy requirements we will assess if the app complies
with those technical needs. If an app developer falls under HIPPA privacy but
fails to meet the requirement, we will notify them and explain it to them.
Can you explain the
process that Happtique will use to rate different health apps?
We are not going to rate apps but rather certify them. In our app
stores that we make available to hospitals, clinicians, and patients, we will
allow them to rate and comment on apps, but the certification process is
independent of that. Thus, when we discover an app (either because it is sent
to us or we find it in one of the public app stores) we will first classify it
by placing it in the right categories to allow our end users to find it. They
will then rate the apps based upon their experience and we will segment those
rating based upon what type of audience that they make up. Finally, for those
developers who want to be certified, we will make that available for a fee and
they will need to provide us with access to their app.
We are doing curation right now and it is available to clinicians
who sign up at our website at www.happtique.com. The ratings engine is also turned on and
anyone with our catalog app running on their devices can start rating apps.
Friday, April 13, 2012
When your doctor prescribes an app: A Q&A with Happtique (Part I)
If you have a smartphone or a tablet computer, your AngryBirds app might have some new company soon: apps prescribed by your doctor to help you manage your health. Last month, I heard Paul Nerger, the Senior Technology Advisor for the mobile application management company Happtique, talk about the brave new
world of health apps at a mobile health panel (hosted in part by the German American Business Association). Intrigued, I asked him to
answer some questions about health apps for this blog.
This is the first post of a two-part Q&A about health apps and how they will impact health care. This post explains who uses and develops health apps. Part II, to be posted next week, explores how health apps are regulated, certified, and rated.
Who uses health apps for smartphones the most: health care providers or consumers/patients? Which group do you think will be driving demand for health apps in the future?
Both.
Clinicians use professional apps that make their jobs easier. That could be anything from keeping up-to-date on the latest medical
journals, using a medical calculator, connecting with a colleague on advice,
using the EHR system in the hospital, to looking up the bus schedule to figure
out how to get from one facility to another.
Patients use apps to make their lives better and more healthy. It could be a diet app, or asking questions about their health, or for
those on the leading edge, tracking their own medical records.
The really interesting aspect is what happens in the future. In the near future, these two communities will start to interact with each
other in ways that we've not seen before. Clinicians will start to
"prescribe" apps to their patients and patients will like this
because patients (i.e., all of us) trust their physicians and other healthcare
professionals who look after us. With over 30,000+ apps available to
help us manage some aspect of our health and well being, we will want help in
figuring out what is good and what is bad, and our physicians and other
clinicians (e.g., pharmacists, nurses, dietitians) will be in the perfect spot
to help us.
But the clinicians need help also: they need to be able to
discover an app that helps with our particular clinical condition, they need to
be confident that the community within their particular professional
association is confident that an app is clinically sound, and they
need an easy mechanism to prescribe this to any given patient.
These are the problems and challenges that we've given a lot of
thought to and are building at Happtique.
What are the most popular health apps currently available?
There are two major categories of apps out there: medical and healthcare. The medical category is really for professionals. Apps
such as Epocrates, Skyscape, 5MinuteConsult, Calculate by QXMD, MedPage Today and
others are very popular with this community since they are needed by all
clinicians. That does not mean that there are not some fantastic apps
that are designed to solve a particular problem. For example, you might
be a pediatric oncologist and you want an app to run on your iPad to help with
informed consent--there is probably an app for that. Thus, the most
popular medical apps might be the ones that fit a particular clinician's
needs best.
And the same is true for the health apps. The most popular
app for an MS patient will be very different than the most popular app for a type 2 diabetes patient.
In other words, the quest for the "killer app" is the
wrong way to look at it. Each of us, be we clinician or patient, will
have our own basket of apps that makes our mobile phone or tablet right for us. Thus it is a world of choice and choosing the collection of apps that fit
our need.
Again, this is why we at Happtique curate all of the medical and healthcare apps under the sun. It is important that we enable you and
your physician to choose the right basket of apps to fit your needs.
Who develops health apps, and what is their motivation to develop an app?
I've seen apps built by physicians who want to make it easier for
the patients that they treat to receive treatment. I've seen apps built
by students who encounter a fellow student or teacher that they want to help
make their life easier with a particular app. I've seen medical
professionals working with engineers who see particular problems in the
hospital that they want to solve and thus they build an app. I've seen
leading clinicians who simply want to improve the outcomes of their class of
patients. I've seen professional developers who see a market to serve and
want to build a business.
In medical and healthcare, there are lots of developers coming
from different backgrounds who are developing apps, but the common thread is a
heartfelt desire to improve the quality of care, the quality of life, while
lowering the cost of healthcare for patients. And this is why mHealth [mobile health] is
different than other segments. mHealth deals with the stuff which our
lives are made of and thus it is a noble cause regardless of the place that you
come from.
Monday, April 2, 2012
Improving CT Scans, Treating MS: Notes from an IR Conference
I am slightly obsessed with the topic of radiation exposure, since I have covered radiation overdoses from CT scans on this blog and written about radiation issues in post-earthquake Japan and treating radiation injuries for Medscape. So I was interested to learn about efforts to decrease radiation exposure in patients when I stopped by the Society of Interventional Radiology's annual meeting in San Francisco last week.
Interventional radiologists (IRs) perform many minimally-invasive procedures, such as placing stents in arteries to increase blood flow or delivering targeted chemotherapy to a tumor. These procedures can often replace more invasive and riskier open surgeries. But the flip side of this medical progress is that some of the imaging technologies used to guide these procedures, specifically CT scans and X-rays, expose patients to ionizing radiation, the type of radiation that can harm DNA.
A poster at the session explained that CT scans are a key source of radiation exposure in the U.S. This exposure can be decreased by adjusting the CT scanner and basing the dose on the patient's BMI, explained author J. Collins et al. ("A Practical Guide to CT Dosimetry for the Interventional Radiologist").
Another intriguing development covered at the conference: the use of angioplasty (widening a narrowed blood vessel) to treat multiple sclerosis. Angioplasty can clear blockages in veins that might contribute to MS symptoms. Some patients who were studied reported that their symptoms improved after the procedure. The course of MS can be so fickle, though, that it's hard to tell whether symptoms improved or the disease simply relapsed for a while, reporter Laird Harrison explained in a WebMD article on the topic ("Treating Clogged Veins Improves MS, Study Says"). The press release about the procedure from the Society of Interventional Radiology is available online.
Interventional radiologists (IRs) perform many minimally-invasive procedures, such as placing stents in arteries to increase blood flow or delivering targeted chemotherapy to a tumor. These procedures can often replace more invasive and riskier open surgeries. But the flip side of this medical progress is that some of the imaging technologies used to guide these procedures, specifically CT scans and X-rays, expose patients to ionizing radiation, the type of radiation that can harm DNA.
A poster at the session explained that CT scans are a key source of radiation exposure in the U.S. This exposure can be decreased by adjusting the CT scanner and basing the dose on the patient's BMI, explained author J. Collins et al. ("A Practical Guide to CT Dosimetry for the Interventional Radiologist").
Another intriguing development covered at the conference: the use of angioplasty (widening a narrowed blood vessel) to treat multiple sclerosis. Angioplasty can clear blockages in veins that might contribute to MS symptoms. Some patients who were studied reported that their symptoms improved after the procedure. The course of MS can be so fickle, though, that it's hard to tell whether symptoms improved or the disease simply relapsed for a while, reporter Laird Harrison explained in a WebMD article on the topic ("Treating Clogged Veins Improves MS, Study Says"). The press release about the procedure from the Society of Interventional Radiology is available online.
Monday, March 26, 2012
Lessons from female crash test dummies
The Washington Post had an interesting article yesterday about the use of female crash test dummies to test car safety in 2011 cars. These dummies, which are lighter and smaller than the male dummies used in the past, provide very different safety data than the male dummies. Some cars tested with the female dummies now have lower safety ratings than they had with male dummies ("Female dummy makes her mark on male-dominated crash tests").
Women drive less than men, but because they tend to be smaller than men they are more vulnerable to injury in car crashes, writer Katherine Shaver points out. They are also more likely to be in the passenger seat than in the driver's seat when traveling with others, which increases their risk for injury and death.
Despite these gender differences, the National Highway Traffic Safety Administration has used only male dummies to create crash test ratings for cars in the past. The story about the use of new female dummies in the 2011 ratings is worth reading to better understand the true risks of driving for women, which the auto industry can address with improved safety features.
Women drive less than men, but because they tend to be smaller than men they are more vulnerable to injury in car crashes, writer Katherine Shaver points out. They are also more likely to be in the passenger seat than in the driver's seat when traveling with others, which increases their risk for injury and death.
Despite these gender differences, the National Highway Traffic Safety Administration has used only male dummies to create crash test ratings for cars in the past. The story about the use of new female dummies in the 2011 ratings is worth reading to better understand the true risks of driving for women, which the auto industry can address with improved safety features.
Thursday, March 15, 2012
How mobile phones improve public health
Smartphones and cell phones are increasingly playing a role in public health. Combine a smartphone with crowdsourcing and infectious diseases, for example, and you end up with a novel concept called participatory epidemiology. The Outbreaks Near Me app for iPhone and Android, for example, released during the swine flu epidemic in 2009, collects data from users and from the media to track the flu and other diseases in every part of the country. Install the app and you can see what disease might be tearing through your city right now (in my neck of the woods, it's the highly contagious Norovirus).
Mobile phones are also used to manage the response after disasters and disease outbreaks. In an interesting article about participatory epidemiology written by the creator of Outbreaks Near Me, the authors cite applications such as Ushahidi, used to manage the response after the Haitian earthquake in 2010, and GeoChat, used to track diseases in Southeast Asia (you can read about the pros and cons of participatory epidemiology in the article "Participatory Epidemiology: Use of Mobile Phones for Community-Based Health Reporting").
For health care providers in resource-poor countries, tracking data on a smartphone is actually easier than tracking it on paper, according to a study released by the CDC this week ("Smartphones more accurate, faster, cheaper for disease surveillance"). In the study, providers collected data for questionnaires about influenza in Kenya using either smartphones or paper forms. The smartphone data was more thorough and (since it was digital) quicker to access in a database than data recorded on paper. What's more, the 2-year cost of implementing smartphones to fill out these questionnaires was also lower than the cost of collecting the data on paper.
More widespread collection of health care data can serve the public good. Perhaps that's how health care data should be seen: as a public asset that we can all contribute to and that we all benefit from. As more health care data is digitized for easier access by public health officials and other entities, however, it becomes increasingly important to protect the privacy of each contributor.
Mobile phones are also used to manage the response after disasters and disease outbreaks. In an interesting article about participatory epidemiology written by the creator of Outbreaks Near Me, the authors cite applications such as Ushahidi, used to manage the response after the Haitian earthquake in 2010, and GeoChat, used to track diseases in Southeast Asia (you can read about the pros and cons of participatory epidemiology in the article "Participatory Epidemiology: Use of Mobile Phones for Community-Based Health Reporting").
For health care providers in resource-poor countries, tracking data on a smartphone is actually easier than tracking it on paper, according to a study released by the CDC this week ("Smartphones more accurate, faster, cheaper for disease surveillance"). In the study, providers collected data for questionnaires about influenza in Kenya using either smartphones or paper forms. The smartphone data was more thorough and (since it was digital) quicker to access in a database than data recorded on paper. What's more, the 2-year cost of implementing smartphones to fill out these questionnaires was also lower than the cost of collecting the data on paper.
More widespread collection of health care data can serve the public good. Perhaps that's how health care data should be seen: as a public asset that we can all contribute to and that we all benefit from. As more health care data is digitized for easier access by public health officials and other entities, however, it becomes increasingly important to protect the privacy of each contributor.
Friday, March 2, 2012
Should you check your DNA?
In medicine, aggregated personal health data, including genetic information, is extremely valuable, even lifesaving. Researchers can analyze data from electronic medical records to find patterns of diseases, see how well treatments work across broad populations, and to pinpoint risk factors for a variety of ills (identifying details for each patient, such as name and address, are blocked to protect the patient's identity).
Some organizations also gather and analyze genetic information to combat specific diseases as a public service. One such organization is the bone marrow donation site DKMS Americas, which collects genetic information from volunteers to create a database of potential donors for cancer patients. This service has saved and improved many lives over the years.
But what happens when the analysis of genetic information becomes a consumer product? The testing company 23andMe, for example, collects a DNA sample from a you and analyzes it to tell you your genetic heritage and your risk for various diseases. The wellness company GeneMe collects DNA to create personalized supplements to improve your health. And the list goes on. These companies encourage customers to use their knowledge of disease risks to make healthy lifestyle choices that might reduce these risks.
In an "Ethicist" column in last Sunday's New York Times about DNA testing companies ("Sizing Up the Family Gene Pool"), however, Ariel Kaminer explains that consumers don't always have control over or knowledge about how their genetic information is used:
Your genetic information is legally protected by the Genetic Information Nondiscrimination Act of 2008 (GINA). The law prohibits discrimination against individuals by employers or health insurers based on the individual's genetic information, which includes genetic tests and genetic diseases in that person or their family members.
But consumer genetic testing is new territory. It's true that this genetic information might be useful to the consumer and the consumer is legally protected against discrimination. But what if the information is leaked or hacked, or the data is misused in unforeseen ways, or by new, yet-to-be-invented technologies? The recent furor over Google's privacy policy demonstrates that we don't always understand what we're giving up when we use new technologies.
Some organizations also gather and analyze genetic information to combat specific diseases as a public service. One such organization is the bone marrow donation site DKMS Americas, which collects genetic information from volunteers to create a database of potential donors for cancer patients. This service has saved and improved many lives over the years.
But what happens when the analysis of genetic information becomes a consumer product? The testing company 23andMe, for example, collects a DNA sample from a you and analyzes it to tell you your genetic heritage and your risk for various diseases. The wellness company GeneMe collects DNA to create personalized supplements to improve your health. And the list goes on. These companies encourage customers to use their knowledge of disease risks to make healthy lifestyle choices that might reduce these risks.
In an "Ethicist" column in last Sunday's New York Times about DNA testing companies ("Sizing Up the Family Gene Pool"), however, Ariel Kaminer explains that consumers don't always have control over or knowledge about how their genetic information is used:
Many of these companies do use customers' data for medical research or commercial applications, or they sell it to third parties whose interests you might never know. Legally they can't do that without your consent, but the fine print on those consent forms goes by so quickly that it can be hard to follow.Kaminer also points out another problem: the results of these tests can be wrong. "A Government Accountability Office investigation into so-called direct-to-consumer genetic testing found inaccurate results and exaggerated claims about how much those results could really tell you," she writes.
Your genetic information is legally protected by the Genetic Information Nondiscrimination Act of 2008 (GINA). The law prohibits discrimination against individuals by employers or health insurers based on the individual's genetic information, which includes genetic tests and genetic diseases in that person or their family members.
But consumer genetic testing is new territory. It's true that this genetic information might be useful to the consumer and the consumer is legally protected against discrimination. But what if the information is leaked or hacked, or the data is misused in unforeseen ways, or by new, yet-to-be-invented technologies? The recent furor over Google's privacy policy demonstrates that we don't always understand what we're giving up when we use new technologies.
Friday, February 24, 2012
Is Your Parents' Health Your Destiny?
I attended a health technology forum recently in Silicon Valley, and, not surprisingly, the issue of health care for Baby Boomers came up. A number of promising new technologies and services are being developed to keep Boomers healthier and help them avoid expensive hospital stays as they age.
The people who are watching Boomer health most carefully, however, are not those creating and funding these new technologies; they are the children of the Boomers. As some speakers noted at the forum, many children of aging parents want to take steps now to avoid developing the chronic illnesses that they see their parents struggle with.
I thought about children of the Boomers when I read the article "12 Ways to Live a Better Life" in the Washington Post this week, based on the book 30 Lessons for Living: Tried and True Advice from the Wisest Americans by gerontologist Karl A. Pillemer. The book compiles life advice from 1,000-plus elderly that Pillemer interviewed, including advice to make healthy changes early in life to help avoid the miseries of chronic disease later in life.
The Baby Boomers are certainly driving changes and innovation in health care. But their children, who are starting to see first-hand the effects of extending life without improving the quality of life, are the ones who will probably work hardest to decrease the high rate of chronic disease in the U.S.
The people who are watching Boomer health most carefully, however, are not those creating and funding these new technologies; they are the children of the Boomers. As some speakers noted at the forum, many children of aging parents want to take steps now to avoid developing the chronic illnesses that they see their parents struggle with.
I thought about children of the Boomers when I read the article "12 Ways to Live a Better Life" in the Washington Post this week, based on the book 30 Lessons for Living: Tried and True Advice from the Wisest Americans by gerontologist Karl A. Pillemer. The book compiles life advice from 1,000-plus elderly that Pillemer interviewed, including advice to make healthy changes early in life to help avoid the miseries of chronic disease later in life.
The Baby Boomers are certainly driving changes and innovation in health care. But their children, who are starting to see first-hand the effects of extending life without improving the quality of life, are the ones who will probably work hardest to decrease the high rate of chronic disease in the U.S.
Friday, February 10, 2012
Why Contagion Didn't Get an Oscar Nod
With the Academy Awards approaching, I'm wrapping up my yearly quest to see as many of the movies nominated for Best Picture as possible before the show. Working my way through the list of nominated movies, I enjoyed the clever film The Artist, even though I was initially loathe to watch a French silent film about actors set during the Depression.
But this year's Oscar nominations have been frustrating for me as well, because I thought that Contagion would be nominated for Best Picture or for another major Academy award. Hollywood politics no doubt played a part in the nominations. But I wonder whether the Academy's passover of Contagion comes from a more primal place.
Contagion, which I saw in the fall, was a very difficult movie to watch. Although the script sometimes veered into science lecture territory, in general the movie seemed realistic and frightening as it documented how quickly a lethal virus could spread worldwide.
For me, the movie brought up fresh memories of the 2009 swine flu (H1N1) pandemic. I had been concerned about swine flu, not panicked about it, and mostly allayed my fears by passing out bottles of hand sanitizer to family members.
Because my pediatrician did not have access to the new H1N1 vaccine, in the fall of 2009 I took the kids to a local clinic to get vaccinated, waiting in line with other families and seniors. As the line grew and wrapped around the block, a rumor spread that the clinic had run out of the vaccine.
Suddenly, the police showed up, as if they expected the parents and seniors to riot in the street (and do what? Toss sippy cups and canes at them?). Their presence did not calm people down. It just made all of us nervous: what was going on? As it turned out, the clinic did have enough vaccine, and after waiting several hours in line, the kids got their shots. But the edginess in the line, and in the city, was real.
Now, many of us don't think much about the possibility of another influenza pandemic, until a movie like Contagion is released. Or until researchers are asked to suspend their work on developing a flu strain that is considered a biosecurity threat, as happened earlier this year.
Everyone's a little jumpy these days. Maybe even Hollywood, whose idea of entertainment includes a mother in a coma (The Descendants) and an actor in a downward spiral (The Artist), finds a movie about a global pandemic a bit too disturbing.
But this year's Oscar nominations have been frustrating for me as well, because I thought that Contagion would be nominated for Best Picture or for another major Academy award. Hollywood politics no doubt played a part in the nominations. But I wonder whether the Academy's passover of Contagion comes from a more primal place.
Contagion, which I saw in the fall, was a very difficult movie to watch. Although the script sometimes veered into science lecture territory, in general the movie seemed realistic and frightening as it documented how quickly a lethal virus could spread worldwide.
For me, the movie brought up fresh memories of the 2009 swine flu (H1N1) pandemic. I had been concerned about swine flu, not panicked about it, and mostly allayed my fears by passing out bottles of hand sanitizer to family members.
Because my pediatrician did not have access to the new H1N1 vaccine, in the fall of 2009 I took the kids to a local clinic to get vaccinated, waiting in line with other families and seniors. As the line grew and wrapped around the block, a rumor spread that the clinic had run out of the vaccine.
Suddenly, the police showed up, as if they expected the parents and seniors to riot in the street (and do what? Toss sippy cups and canes at them?). Their presence did not calm people down. It just made all of us nervous: what was going on? As it turned out, the clinic did have enough vaccine, and after waiting several hours in line, the kids got their shots. But the edginess in the line, and in the city, was real.
Now, many of us don't think much about the possibility of another influenza pandemic, until a movie like Contagion is released. Or until researchers are asked to suspend their work on developing a flu strain that is considered a biosecurity threat, as happened earlier this year.
Everyone's a little jumpy these days. Maybe even Hollywood, whose idea of entertainment includes a mother in a coma (The Descendants) and an actor in a downward spiral (The Artist), finds a movie about a global pandemic a bit too disturbing.
Wednesday, November 30, 2011
Fixing the Pharms
Whether you love or loathe pharmaceutical companies, it's clear that we have a problem with pharmaceutical delivery in the U.S.
First of all, some drugs are inexplicably expensive. There's the $93,000 prostrate cancer drug Provenge, for example, which I've blogged about in the past ("The Skewed Values of Drug Prices"). A more recent example is Anascorp, an orphan drug (used to treat rare diseases) approved by the FDA in August to treat scorpion stings. Anascorp has been used in Mexico for many years, at a cost of $100 per dose, but in the U.S. it now costs $12,000 per dose, according to a recent Kaiser Health News blog post on the topic ("Treating a Scorpion Sting: $100 in Mexico or $12,000 in U.S."). Blog author Jenny Gold points out that patients need up to five doses of the anti-venom to recover.
It's not fair, however, to blame the cost entirely on the manufacturer, Rare Disease Therapeutics. Gold writes that hospitals in Arizona purchase Anascorp for about $3,700 per dose, then mark up the price to cover their own costs, including the cost of providing care for uninsured patients. It's a long and tangled journey from a $100 dose to a $12,000 dose, and one that does not serve patients well.
More common drugs aren't faring much better, however. There is currently a shortage of generic injectable drugs used to treat cancer and other serious medical problems, an issue covered earlier this month by another Kaiser Health News blog post ("Drug Shortages Affect More Than half a Million Cancer Patients").
The problem has become so acute that it triggered a presidential smackdown, a.k.a. an executive order, in October that demands FDA action and includes Justice Department investigations of possible price gouging. There are many reasons for these drug shortages, such as a shortage of raw materials needed to make the drugs, and a limited number of manufacturers, who drop production of the drugs if they are not profitable enough or if they have problems with the manufacturing process (as sometimes happens with vaccines).
What's the cure for all this? Don't get sick, silly. But failing that, as we all do from time to time, it seems clear to me that the government needs to flex its muscle with the pharmaceutical companies that bring both great good and great expense to health care.
Taxpayer-funded research should not lead to drugs that taxpayers cannot afford when they need them. The pursuit of blockbuster drugs - those that earn $1 billion or more per year in revenues - should not undermine the development of less profitable, equally necessary treatments for other diseases. Government incentives and regulations should ensure that a wide range of manufacturers are providing the medications that Americans need.
First of all, some drugs are inexplicably expensive. There's the $93,000 prostrate cancer drug Provenge, for example, which I've blogged about in the past ("The Skewed Values of Drug Prices"). A more recent example is Anascorp, an orphan drug (used to treat rare diseases) approved by the FDA in August to treat scorpion stings. Anascorp has been used in Mexico for many years, at a cost of $100 per dose, but in the U.S. it now costs $12,000 per dose, according to a recent Kaiser Health News blog post on the topic ("Treating a Scorpion Sting: $100 in Mexico or $12,000 in U.S."). Blog author Jenny Gold points out that patients need up to five doses of the anti-venom to recover.
It's not fair, however, to blame the cost entirely on the manufacturer, Rare Disease Therapeutics. Gold writes that hospitals in Arizona purchase Anascorp for about $3,700 per dose, then mark up the price to cover their own costs, including the cost of providing care for uninsured patients. It's a long and tangled journey from a $100 dose to a $12,000 dose, and one that does not serve patients well.
More common drugs aren't faring much better, however. There is currently a shortage of generic injectable drugs used to treat cancer and other serious medical problems, an issue covered earlier this month by another Kaiser Health News blog post ("Drug Shortages Affect More Than half a Million Cancer Patients").
The problem has become so acute that it triggered a presidential smackdown, a.k.a. an executive order, in October that demands FDA action and includes Justice Department investigations of possible price gouging. There are many reasons for these drug shortages, such as a shortage of raw materials needed to make the drugs, and a limited number of manufacturers, who drop production of the drugs if they are not profitable enough or if they have problems with the manufacturing process (as sometimes happens with vaccines).
What's the cure for all this? Don't get sick, silly. But failing that, as we all do from time to time, it seems clear to me that the government needs to flex its muscle with the pharmaceutical companies that bring both great good and great expense to health care.
Taxpayer-funded research should not lead to drugs that taxpayers cannot afford when they need them. The pursuit of blockbuster drugs - those that earn $1 billion or more per year in revenues - should not undermine the development of less profitable, equally necessary treatments for other diseases. Government incentives and regulations should ensure that a wide range of manufacturers are providing the medications that Americans need.
Monday, October 31, 2011
What vaccines say about parents
Two vaccines targeted to children have been in the news this month: a vaccine in clinical trials in parts of Africa that offers some protection from malaria (which is a leading cause of death in African children, according to the World Health Organization), and the human papillomavirus (HPV) vaccine, which prevents infection with certain cancer-causing strains of the HPV virus. Although the HPV vaccine has been recommended for tween girls for several years, the CDC will likely recommend it for boys as well soon.
The malaria vaccine, which is only about 35% effective in preventing malaria, is being heralded as a major breakthrough in preventing a disease that can be deadly in children, especially as the mosquitoes that transmit malaria become resistant to pesticides. On the other hand, the HPV vaccine, which prevents infection with certain strains of HPV that can cause serious health problems such as cervical cancer, genital warts, and oral cancers, has triggered a lot of angst and hand-wringing. It has been criticized as a pharmaceutical boondoggle (costing about $400 for the three-dose series), an invitation to promiscuity for the tweens who receive the vaccine, or (when the vaccine is mandated), a governmental intrusion in the lives of people.
Malaria is transmitted by mosquitoes, while HPV is generally transmitted by sexual contact, which is part of the reason some Americans are squeamish about the HPV vaccine. Vaccines are a public health initiative, though, and American parents tend to forget this as they fret about whether a vaccine will reset their child's moral compass.
Although many parents view vaccines as an individual choice that affects only their family, a vaccine doesn't just protect one child from an infection. Most vaccines also prevent the child from transmitting an infectious disease to someone else. Others might be vulnerable to a disease because they are unvaccinated, too young to be vaccinated, have an illness that prevents them from getting a vaccination, or because (often unknown to them) they have not developed immunity to a disease after being vaccinated.
The HPV vaccine recommendation was extended to boys because they also transmit the virus, even if they are generally at less risk for developing cancer from the virus than girls are. It can be hard, though, to persuade parents to think about their neighbor's children as well as their own.
The malaria vaccine, which is only about 35% effective in preventing malaria, is being heralded as a major breakthrough in preventing a disease that can be deadly in children, especially as the mosquitoes that transmit malaria become resistant to pesticides. On the other hand, the HPV vaccine, which prevents infection with certain strains of HPV that can cause serious health problems such as cervical cancer, genital warts, and oral cancers, has triggered a lot of angst and hand-wringing. It has been criticized as a pharmaceutical boondoggle (costing about $400 for the three-dose series), an invitation to promiscuity for the tweens who receive the vaccine, or (when the vaccine is mandated), a governmental intrusion in the lives of people.
Malaria is transmitted by mosquitoes, while HPV is generally transmitted by sexual contact, which is part of the reason some Americans are squeamish about the HPV vaccine. Vaccines are a public health initiative, though, and American parents tend to forget this as they fret about whether a vaccine will reset their child's moral compass.
Although many parents view vaccines as an individual choice that affects only their family, a vaccine doesn't just protect one child from an infection. Most vaccines also prevent the child from transmitting an infectious disease to someone else. Others might be vulnerable to a disease because they are unvaccinated, too young to be vaccinated, have an illness that prevents them from getting a vaccination, or because (often unknown to them) they have not developed immunity to a disease after being vaccinated.
The HPV vaccine recommendation was extended to boys because they also transmit the virus, even if they are generally at less risk for developing cancer from the virus than girls are. It can be hard, though, to persuade parents to think about their neighbor's children as well as their own.
Monday, October 17, 2011
Ignoring Long Term Care
In print and screen advertisements, retirement is often portrayed as a time to start a second career, spend more time with the grandchildren, volunteer for a worthy cause, or travel around the world. Any health problems can be managed with prescription medications and moderate exercise.
Realistically, however, many Americans will ultimately need long-term care in a nursing home or in their own homes when they get older. Medicare, which in most cases does not cover long term care, predicts that 12 million elderly will need long term care by 2020, and HHS predicts that 40% of 65-year-olds will ultimately go into a nursing home for some period of time. Non-skilled long term care is often provided by family and friends, such as help with daily activities, while skilled long-term care often must be paid out of pocket.
With the recent demise of the CLASS Act, a section of health care reform designed to encourage Americans to purchase long-term care insurance, the issue of long term care has come to the forefront. The CLASS Act had fiscal flaws, with high monthly costs for insurance, but dropping it does not solve the problem of long-term care. In this economy, with many families struggling, few want to contemplate the stress and expense of caring for an ill spouse or relative. But ultimately, many of us will need to help out.
Kaiser Health News' Howard Gleckman suggests providing long-term care in the future through universal coverage or through insurance policy incentives. Whatever the solution, the current gaps promise to cause many problems for families as the large generation of Baby Boomers ages, along with the rest of us.
Realistically, however, many Americans will ultimately need long-term care in a nursing home or in their own homes when they get older. Medicare, which in most cases does not cover long term care, predicts that 12 million elderly will need long term care by 2020, and HHS predicts that 40% of 65-year-olds will ultimately go into a nursing home for some period of time. Non-skilled long term care is often provided by family and friends, such as help with daily activities, while skilled long-term care often must be paid out of pocket.
With the recent demise of the CLASS Act, a section of health care reform designed to encourage Americans to purchase long-term care insurance, the issue of long term care has come to the forefront. The CLASS Act had fiscal flaws, with high monthly costs for insurance, but dropping it does not solve the problem of long-term care. In this economy, with many families struggling, few want to contemplate the stress and expense of caring for an ill spouse or relative. But ultimately, many of us will need to help out.
Kaiser Health News' Howard Gleckman suggests providing long-term care in the future through universal coverage or through insurance policy incentives. Whatever the solution, the current gaps promise to cause many problems for families as the large generation of Baby Boomers ages, along with the rest of us.
Friday, September 30, 2011
Did You Feel It?
I thought it was a truck going by, but that's what I always think when the little earthquakes strike. It took me a moment to realize what it might be. It was near the end of the work day for me, but my laptop was still on, so I logged on to the U.S. Geological Survey site to find out that it was a magnitude 3.3 earthquake near Oakland, CA yesterday. I was far enough away that I barely felt it.
I reported it on the USGS "Did You Feel It?" page, adding my data to everyone else's, not just because I've been studying statistics lately but because it's exciting to make even a small contribution to science. I showed a printout of responses to my children later and they were interested, too; one of them had felt the earthquake, the other had not.
The USGS site shows math and science in action, data gathered and maps produced for the public good. It's much more interesting to see concepts applied than to, say, memorize the times table. Science that you can feel, hear, and touch is fun to learn, and Americans definitely need to learn more science (perhaps starting with Republican presidential candidate Michele Bachmann and her misguided comments on HPV vaccination).
I wanted to thank the USGS for making science fun and relevant yesterday. Did I feel it? Yes - surprise and excitement and a twinge of worry as the earthquake passed through and I looked up its magnitude online. Did my kids feel it? Yes - surprise and excitement as they realized that science had just rattled their world a little.
I reported it on the USGS "Did You Feel It?" page, adding my data to everyone else's, not just because I've been studying statistics lately but because it's exciting to make even a small contribution to science. I showed a printout of responses to my children later and they were interested, too; one of them had felt the earthquake, the other had not.
The USGS site shows math and science in action, data gathered and maps produced for the public good. It's much more interesting to see concepts applied than to, say, memorize the times table. Science that you can feel, hear, and touch is fun to learn, and Americans definitely need to learn more science (perhaps starting with Republican presidential candidate Michele Bachmann and her misguided comments on HPV vaccination).
I wanted to thank the USGS for making science fun and relevant yesterday. Did I feel it? Yes - surprise and excitement and a twinge of worry as the earthquake passed through and I looked up its magnitude online. Did my kids feel it? Yes - surprise and excitement as they realized that science had just rattled their world a little.
Monday, September 26, 2011
Should Smokers Be Banned from Hospital Jobs?
Texas' Baylor Health Care joined the Cleveland Clinic and other hospitals in banning smokers from hospital jobs, Fierce Healthcare reported today. As Alice Wolke of My FOX Houston explained in an article about Baylor Health Care's decision, "on the company's Careers page, the rules are laid out:
- Applicants who admit to nicotine use will not have their applications processed
- Anyone who is hired will be tested for nicotine
- If you test positive, your job offer will be withdrawn
- After a positive result, you can reapply for the job after 90 days"
Friday, September 9, 2011
Rethinking Children's Hospital Ratings
A study published recently in Pediatrics cited the "statistical uncertainty" of using mortality rates in children's hospitals to rank their quality. The study of approximately 473,000 U.S. patients discharged from children's hospitals in 2008 found that adjusted mortality rates at the 42 hospitals studied did not vary much by the hospital's ranking ("Statistical Uncertainty of Mortality Rates and Rankings for Children's Hospitals").
In a cogent Reuters article on the topic, Frederik Joelving points out that death rates, " which carry heavy weight in commercial rankings like the U.S. News & World Report Best Hospitals, are mostly indistinguishable from a statistical point of view" ("Hospital ratings for kids a roll of the dice: study").
Dr. Chris Feudtner, lead author on the Pediatrics article, told Reuters that when patients look for a hospital, along with rankings they should also consider other issues, such as its proximity to their home. Statistics seem to promise clear answers to complicated questions, but sometimes they can't deliver that.
In a cogent Reuters article on the topic, Frederik Joelving points out that death rates, " which carry heavy weight in commercial rankings like the U.S. News & World Report Best Hospitals, are mostly indistinguishable from a statistical point of view" ("Hospital ratings for kids a roll of the dice: study").
Dr. Chris Feudtner, lead author on the Pediatrics article, told Reuters that when patients look for a hospital, along with rankings they should also consider other issues, such as its proximity to their home. Statistics seem to promise clear answers to complicated questions, but sometimes they can't deliver that.
Monday, August 29, 2011
Few Cancer Patients Join Clinical Trials
With cancer rates soaring - an estimated 1.5 million Americans were diagnosed with cancer in 2010, according to the National Cancer Institute - there's an increasing need for better cancer treatments. But fewer than 1% of cancer patients join clinical trials.
In an article just published in the Annals of Surgery, Waddah B. Al-Refaie, MD and colleagues found that just 0.64% of patients with solid tumors enrolled in clinical trials. They analyzed data on 244,528 cancer patients from the California Cancer Registry from 2001-2008 ("Cancer Trials Versus the Real World in the United States").
The authors point out that the few patients who do join trials do not represent the wide range of U.S. cancer patients. Patients who do enroll in clinical trials tend to be white, younger than 65 years old, and have late-stage cancer, the authors state. This lack of diversity makes it hard to assess how well a new drug might work on other types of patients.
There are many reasons why cancer patients don't join clinical trials. Some of the barriers are financial: doctors don't always tell patients about clinical trials for fear of losing patient revenue to the trial, and insurers don't always cover the cost of clinical trials for patients (although that should change with reform in 2014), explains Betsy de Parry on Candid Cancer ("Low enrollment in clinical trials is hampering progress"). Some barriers are more complex: patients might not live near clinical trial sites, and minority patients might distrust medical authorities, particularly around clinical trials, points out the National Cancer Institute, in a web page on trial participation that is older but still relevant.
The bottom line is that trial participation is inadequate to develop better, potentially life-saving treatments that so many cancer patients need. Information about joining cancer clinical trials is available online at the National Cancer Institute's website.
In an article just published in the Annals of Surgery, Waddah B. Al-Refaie, MD and colleagues found that just 0.64% of patients with solid tumors enrolled in clinical trials. They analyzed data on 244,528 cancer patients from the California Cancer Registry from 2001-2008 ("Cancer Trials Versus the Real World in the United States").
The authors point out that the few patients who do join trials do not represent the wide range of U.S. cancer patients. Patients who do enroll in clinical trials tend to be white, younger than 65 years old, and have late-stage cancer, the authors state. This lack of diversity makes it hard to assess how well a new drug might work on other types of patients.
There are many reasons why cancer patients don't join clinical trials. Some of the barriers are financial: doctors don't always tell patients about clinical trials for fear of losing patient revenue to the trial, and insurers don't always cover the cost of clinical trials for patients (although that should change with reform in 2014), explains Betsy de Parry on Candid Cancer ("Low enrollment in clinical trials is hampering progress"). Some barriers are more complex: patients might not live near clinical trial sites, and minority patients might distrust medical authorities, particularly around clinical trials, points out the National Cancer Institute, in a web page on trial participation that is older but still relevant.
The bottom line is that trial participation is inadequate to develop better, potentially life-saving treatments that so many cancer patients need. Information about joining cancer clinical trials is available online at the National Cancer Institute's website.
Friday, August 19, 2011
Leaving for Private Practice
Recently, several doctors that my family uses told me that they are leaving the hospital where they practice to become independent. I was surprised to hear this, because I had read that the the opposite is true: doctors are leaving private practice for the safety of a steady hospital salary.
Our doctors' frustrations, however, were legion. They disagreed with the hospital's billing practices, and were disappointed with the poor upkeep of the buildings. They suspected that political wranglings would block planned renovations to the hospital.
I had to agree with them on all these counts. As exhausted new parents, we tangled with the hospital's aggressive billing department just a few weeks after my oldest child was born. One of the hospital's parking garages has no elevators, which is fine unless you are pregnant, injured, nauseous, or disabled. Once, we had to carry a seriously ill child through a long, dark, underground tunnel in the belly of the hospital to hand-deliver a specimen for testing.
While sending us and our insurer bills regularly, the hospital also periodically asks for donations to its charities and building campaign. I decided long ago that we had given enough.
Despite the hassles, though, we have received excellent care from the doctors affiliated with the hospital, which kept us coming back. It's been nice to have most of our providers all in one place. Now we will need to drive all over town for doctor's visits, as our trusted community of doctors slowly disperses.
Our doctors' frustrations, however, were legion. They disagreed with the hospital's billing practices, and were disappointed with the poor upkeep of the buildings. They suspected that political wranglings would block planned renovations to the hospital.
I had to agree with them on all these counts. As exhausted new parents, we tangled with the hospital's aggressive billing department just a few weeks after my oldest child was born. One of the hospital's parking garages has no elevators, which is fine unless you are pregnant, injured, nauseous, or disabled. Once, we had to carry a seriously ill child through a long, dark, underground tunnel in the belly of the hospital to hand-deliver a specimen for testing.
While sending us and our insurer bills regularly, the hospital also periodically asks for donations to its charities and building campaign. I decided long ago that we had given enough.
Despite the hassles, though, we have received excellent care from the doctors affiliated with the hospital, which kept us coming back. It's been nice to have most of our providers all in one place. Now we will need to drive all over town for doctor's visits, as our trusted community of doctors slowly disperses.
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