Real World Health Care Blog

Tag Archives: cancer

Big Data Declares a War on Cancer

In 1970, cancer was the second-leading cause of death in the United States. President Nixon made fighting this disease a priority in his 1971 State of the Union address: “I will also ask for an appropriation of an extra $100 million to launch an intensive campaign to find a cure for cancer, and I will ask later for whatever additional funds can effectively be used. The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal.”

DataSocietyLots of great progress has been made over the past 45 years. Many challenges remain, but the technological capabilities have vastly improved.

In his last State of the Union address, President Obama re-iterated Vice President Joe Biden’s plea for a concerted effort to use the brightest minds in the U.S. to cure cancer, and announced the creation of a national cancer moonshot. President Obama asked Vice President Biden to be “in charge of Mission Control.” “For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all,” Obama said.

The good news is that today there is a massive amount available for cancer researchers to use in their mission. The challenge is that due to the lack of reporting standards and the disparate databases, much of the data is left un-analyzed, which can lead to lots of missed opportunities for breakthroughs.

Since President Obama’s declaration, Vice President Biden has met with leaders of the MD Anderson Cancer Center at the University of Texas, which in 2012, launched the Moon Shots Program aimed at reducing cancer mortality. There are many types of cancers. While they are all driven by gene mutations in various cells, every type of cancer requires a targeted approach. The Moon Shots Program has many mini-projects, or Moon Shots, aimed at treating specific cancers.

The program’s innovation is driven by the multitude of specialists involved in the project, from clinicians to biostatisticians and programmers. The Moon Shots include research into B-cell lymphoma, glioblastoma (brain cancer), cancers caused by the human papillomavirus (HPV), high-risk multiple myeloma, colorectal and pancreatic cancers, breast and ovarian cancers, chronic lymphocytic leukemia, lung cancer, melanoma, myelodysplastic syndrome/acute myeloid leukemia and prostate cancer. It covers an unprecedented number of diseases by one effort.

Cancer is a complicated ailment with complex treatments. A single tumor can have more than 100 billion cells and each cell can have different genetic mutations. The mutations are not constant over time, which requires an evolving treatment. To understand each cancer, clinicians need to understand the kinds of mutations that are driving it. There are 3 billion code letters, or amino acids, in each cell so understanding the mutations expressed in each tumor is no small task. There are as many as 300 billion opportunities for mutation in just one tumor.

With so much complexity, there are many ways to approach cancer research. For example, scientists at the NIH have used network analysis methods to map out protein interactions to discover new biomarkers and significant players in the cell’s architecture. These discoveries help guide clinical studies and other research on gene expression.

Researchers across Moon Shots programs are using machine-learning models to predict whether a patient has various types of cancer based on the expression levels of specific genes. Implementation for thyroid cancer has been especially fruitful. Thyroid cancer usually causes a lump at the base of the neck, and around 5 to 15 percent of these lumps are malignant. By measuring gene expression at the lump the machine-learning model is able to predict with greater than 90 percent accuracy whether it is malignant or benign. The work was published in Clinical Cancer Research in 2012.

Protein data is not the only kind of information used by researchers. Scientists at Case Western University have used machine-learning techniques on Magnetic Resonance Images (MRIs) of breast cancer patients to predict if a patient is suffering from aggressive triple-negative breast cancer, slower-moving cancers or non-cancerous lesions with 95 percent accuracy. Today’s capabilities of image analytics can significantly augment the insights gleaned from lab tests. The challenge with cancer is getting a full picture.

Text stored in medical records is another powerful source of relatively untapped data. Modern natural language processing capabilities can analyze massive amounts of unstructured data and combine the results with structured research and clinical information. Combining doctors’ notes versus numerical lab tests, for example, can give context to the condition and symptoms of the patient at various stages of different cancers.

Medical records include a treasure trove of data. Factors such as family histories, clinical test results and genomic data are stored in repositories across the world. The challenge is combining all that data in one database.

“Big data is not just big. The term also implies three additional qualities: multiple varieties of data types, the velocity at which the data is generated, and the volume seen within MD Anderson,” says Keith Perry, associate vice president and deputy chief information officer.

One of the ambitious objectives of the MD Anderson Cancer Center is to collect and combine patient information including a profile of their genetic makeup, clinical histories, test results, treatment courses and treatment responses. This data will be interpreted by the massive data analytics, which provide real-time decision support to rapidly improve clinical outcomes. This is a much more challenging task than meets the eye.

When the startup Flatiron Health launched with an ambitious goal to improve cancer treatment, one of the largest obstacles they faced is the inconsistency of records from various Electronic Health Record systems (EHRs).

With over $100 million in backing from Google Ventures, Flatiron is facing this basic problem: when measuring the level of a single protein commonly tested in cancer patients, a single EMR from a single cancer clinic showed results in more than 30 different formats. There are over 100 different kinds of protein and genetic tests, biopsies, and other diagnostic methods used in cancer care. And all the various EMR systems out there report these metrics in different ways. This is an incredibly complex data integration problem. So much so that Flatiron purchased Altos Solutions, which makes an EMR service for oncology practices. This allows the company to control the data collection process.

Finding cures and treatments for various types of cancer is truly a Big Data problem. And the ability to collect, store, share and analyze the data cohesively is still in relevant infancy. This isn’t a problem you can solve with just one approach. Whether using network analysis, text mining or other machine learning techniques, the task is a true inter-disciplinary challenge that requires numerous types of expertise and really Big Data.

Big Data and machine-learning don’t hold all the keys, human analysis and contextualization is key. Yet these technologies are starting to shine the light on how humanity will fight one of the most potent killers on the planet. President Nixon’s initiative gave us the Frederick Cancer Research and Development Center, an internationally recognized center for cancer research, and has achieved many breakthroughs. President Obama’s initiative has the potential to revolutionize the state of cancer treatment. We’ll make a comparison in 45 years!

What Happens When an Investigational Drug Cures Some Patients, but not Most?

David Sheon

David Sheon

To date, 179,158 clinical studies have been registered on ClinicalTrials.gov. Though the majority of these trials result in unsuccessful attempts to bring a drug to market, an untold number of lives have been saved or extended as a result of the successes.

But how many lives were saved by drugs that did not meet their clinical endpoint? Recently, the attention of the medical community has been drawn to “exceptional responders.” These are patients who, contrary to expectation, respond extremely well to drugs that are not found to be effective (or even safe) for use in the general patient population studied in a clinical trial.  The study doesn’t meet its endpoints, but a small number of patients thrive.

With the advent of relatively cheap and easy genetic sequencing, researchers are beginning to better understand why exceptional responders do so well on drugs that have little to no benefit for most patients.

In one case, featured recently in an article in The New York Times, a patient has been living four years with a cancer she was told was untreatable, because she responded well to an experimental drug. Of the seven people given the drug, she was the only one who responded. Sequencing her tumor’s genes, the researchers were able to determine that her response was due to the natural presence of a protein that her cancer needed in order to grow.  The experimental drug stops the production of the same protein. Doctors and researchers have been perplexed by these types of cases for years, yet have only recently been able to examine why this is occurring. Researchers at the National Cancer Institute have begun a study to “understand the molecular underpinnings of exceptional responses to treatment.”

Regardless of the science behind it, there is a very real, ethical dilemma raised by the existence of these exceptional responders. If the drug does not get approved, and especially if the company producing the drug  loses investors and goes out of business because the drug trial didn’t meet its endpoints, exceptional responders will have no way of accessing a treatment that could well save their lives just because of an anomalous genetic makeup. There is nothing in place to guarantee that these patients will be able to access their treatments, even if there are no other alternatives.

According to Wayne Pines, President of Regulatory Services and Healthcare at APCO Worldwide and former Associate Commissioner for Public Affairs at the FDA, however, this issue is not so clear-cut.

“There are a lot of factors that go into a decision as to what an individual patient should do.  Each decision has to be individual,” he said. “We must also take into account the fact that clinical trials are essential to determine if a new drug works and is safe, and there are limits to how much of an experimental product can be produced.”

All of this would seem to indicate that a blanketing policy for dealing with individual patients is not where we have to focus. The presence of the exceptional responder makes it difficult to determine a drug’s efficacy, especially when researchers cannot explain the patient’s response.

“If reasonable endpoints have not been met, then the question is whether the drug has the potential to work,” Mr. Pines said. “Again, this is a decision that has to be made on specific facts, not on the basis of a set policy. A general one size fits all answer to these kinds of questions does not work.”

Ultimately, more research must be done on these cases before making decisions about how to deal with them. With recent advances in molecular testing, hopefully the day is near when we can understand what causes a patient to respond exceptionally, and where to go from there.

What do you think? Should there be policies set in place to protect these patients? If not, how can we ensure that patients can access the drugs they need, when they need them? Let us know in the comment section.

Categories: Access to Care, General

Cancer Doesn’t Care. Please Help on #GivingTuesday.

ECRFjumboCancer Doesn’t Care.

It doesn’t care that a patient can’t afford pain medication or the expense of getting to a treatment center. Cancer Doesn’t Care that some patients are forced to drain their child’s college savings fund or choose between an imaging scan and buying groceries.

Cancer Doesn’t Care. Do you?

Today is #GivingTuesday, a global day where families, individuals, and businesses will come together with a common purpose: giving thanks and helping others.  #GivingTuesday is an annual opportunity to celebrate generosity and donate or volunteer for your charity of choice.  Show that you care about cancer patients by giving to HealthWell’s Emergency Cancer Relief Fund (ECRF).

Whether or not you can make a donation, we’d like your help to build awareness for the Emergency Cancer Relief Fund. One of the easiest ways to help is to share our graphics and messaging (below) with your networks.

1. Please join me in support of @HealthWellOrg’s Emergency Cancer Relief Fund. Click here to donate today: http://bit.ly/cancerrelief #CancerRelief

2. Join us on #GivingTuesday to help #cancer patients cover critical out-of-pocket expenses. http://bit.ly/cancerrelief #CancerRelief

3. Provide meaningful comforts to cancer patients by supporting the Emergency Cancer Relief Fund: http://bit.ly/cancerrelief #CancerRelief

With your support, we will be able to open the Emergency Cancer Relief Fund to assist qualified cancer patients so they can better manage their road to recovery…when waiting another day is not an option.

We hope that you will consider helping HealthWell. Together, we can make the Emergency Cancer Relief Fund a reality. Learn how you can make a difference in the life of a cancer patient.  Join us in showing that you care by donating and reaching out to friends and family through your social network.

This Holiday Season, Give Emergency Relief to Cancer Patients

ECRF_Facebook_wig_boost“You have cancer.”

Those devastating words send chills through us all. As the initial shock subsides the reality of unanticipated expense deals a second, unwelcome blow.

We know from assisting more than 70,000 cancer patients with the cost of their treatments just how financially overwhelming and destructive a cancer diagnosis can be. Cancer Doesn’t Care that a patient can’t afford their pain medication or the expense of getting to a treatment center.  Cancer Doesn’t Care that some patients are forced to drain their child’s college savings fund or choose between an imaging scan and buying groceries.

Cancer Doesn’t Care, but we do.

That’s why during this season of giving, we are proud to announce the launch of our “Cancer Doesn’t Care” giving campaign to raise the remaining funds needed to launch the Emergency Cancer Relief Fund (ECRF). The ECRF will allow us to provide immediate grants to qualified cancer patients to assist them with meaningful comforts, such as anti-nausea medicine, travel to and from an appointment, wigs and other hidden expenses.  Giving is as easy as clicking here.

The out-of-pocket critical costs of cancer can be financially devastating. According to a Duke University Medical Center and Dana-Farber Cancer Institute study, out-of-pocket, cancer-related costs averaged $712 a month. Further, the study found that about 30 percent of respondents said their expenses were a “significant burden” and 11 percent called those expenses a “catastrophic problem.”

The “Cancer Doesn’t Care” campaign asks individuals, celebrities, and corporations for financial and social media support. We’ve created powerful social media graphics and messaging that can be shared to highlight the many ways that cancer affects patients financially.

Cancer patients must pay for so much more than treatment, and every little bit makes a difference. Please help make the holidays a little brighter by donating, and reach out to friends and family through your own social media networks. Share the messages we’ve prepared or create your own.  Even a small donation can make a difference.

Please help ease the burden for someone who has received these three devastating words by asking your social networks to give. On behalf of HealthWell and the thousands of cancer patients we serve, I thank you for caring.

***

The HealthWell Foundation is an independent non-profit that provides financial assistance to underinsured Americans to help them afford life-changing medical treatments (and sponsor of this blog).

 

Patient of the Month: The Most Beautiful Sunrise – One Grandmother’s Story of Survival

Lois and her husband

Lois and her husband

Working 10 hour shifts as a registered nurse in North Liberty, Iowa, Lois Ludvigson did not think much about feeling tired. All of that changed one December morning in 1998, which Lois remembers had – as she put it – the most beautiful sunrise.

The rest of the day was different, however. She had just had her yearly physical, and the results of her bloodwork had come in. When Lois’ doctor put her arm around her and led her into a room, empty except for her husband, she knew this was not about a hospital patient. Lois remembers how it felt hearing her doctor explain to her the different treatment options.

“You’ve just got to go with the shock,” Lois remembers, “It’s so unreal.”

Lois’ doctors – her coworkers and friends – had already planned her appointments out for her, starting with her bone biopsy. On New Year’s Eve, it was confirmed: she had chronic myeloid leukemia.

Lois decided that an interferon treatment would be the best option for her. This type of treatment, which according to Lois is rarely used today, involves the injection of a family of substances used by the immune system to fight diseases. The injections – which Lois gave herself – were affective at slowing the growth and division of leukemia cells, but had significant side-effects for her. After building up a tolerance to the drug, she started displaying flu- and lupus-like symptoms. After having a seizure, her doctor directed her to stop using the drug immediately. At her doctor’s behest, Lois sought out various clinical trials in hopes of finding a new treatment for her condition. Upon calling Stanford University, researchers said they wanted to see her in-person.

Having flown to California for testing, Lois was put on the experimental drug the next day. She continued to send Stanford blood every month and visit Stanford every three months. After the drug got approval and went on the market, took part in a further study there to help with their research in any way she could, which included sending blood to them every three months.

Now that the drug was on the market, though, Lois knew she would have to start paying for it herself. Her insurance covered the interferon treatments, but the new drug was very expensive. So expensive, in fact, that Lois told her husband she simply could not be treated. This was not an option, he replied, and after finding out about the HealthWell Foundation, Lois received a grant that covered the cost of the drug she needed to survive.

“I felt humble, and I still do. I think about the grant and what we would have done without it,” Lois said. “My heart goes out to people who don’t know about it, who are struggling, and I just feel humble.”

Since starting the treatment in September of 2000, Lois’ numbers have been stable. Though her condition still affects her, Lois says she’s come to terms with it.

“You have your little nuisances, not feeling well, feeling fatigue. But, you learn to live with them,” she said. “You learn to ask, ‘Is this worth feeling tired afterwards?’ and if I say yes, I’ll do it. That’s my choice, and I might have to rest the next week after. You learn to live your life differently, but it’s still a full life.”

Nowadays, aside from taking care of her health, Lois sews quilts with a group from her church, all of which are donated to children in hospitals.

“I feel so blessed that I can give back in this way,” Lois said. “Aside from enjoying my children, my grandchildren, my family, that’s my purpose.”

Has leukemia affected your life? How so? Let us know in the comment section.

When a Nurse Becomes a Two-Time Breast Cancer Patient

In honor of Breast Cancer Awareness Month, we approached two-time breast cancer survivor, Kimberly Martinez, to share her story as part of our Patient of the Month series.  Would you like to share your story with other patients about how cancer affects you or your family to?  Drop us a note at the bottom of the post.

Kimberly and her husband

Kimberly and her husband

My name is Kim Martinez.  I am a nurse, a stay at home mom of three kids and a wife to a husband with a very busy position here in Fort Wayne, Indiana.  Prior to my diagnosis, I was caring for my mother in Ohio, who was diagnosed with breast cancer in an advanced stage.  Unfortunately, she was only 57 years old at the time of her diagnosis.  Her cancer was too far advanced and had spread to her brain, and she passed away at 58 years of age.  Ten months later, I was diagnosed with Stage II Triple Negative Left Breast Cancer.  I was only 39 years old. It was devastating to have to go in and get a biopsy and be told right then and there, all by myself, that I had cancer.  Thoughts of death and dying, thoughts of doctors, surgery, and who is going to take care of my kids, thoughts of how am I going to tell my kids, my family… we live out of state… we have no one here to help us… how are we going to do this… how are we going to afford this…how is my husband going to deal with this?  We lost our son five years prior and I saw the sorrow on his face then, I couldn’t bear to see the pain and suffering that we were going to have to endure now, let alone entertain the thought of him being a single dad.

I credit my mother for saving my life, because had it not been for her cancer, my doctor would have never ordered my mammogram.  I was not yet 40 years old.  However, the death of my mother was still very raw in everyone’s hearts and now I had to share my worst fear: that it was now to be my journey.  Watching my mother face this beast with such grace and dignity, I too knew exactly how I was going to handle my inevitable journey as well. I already knew that I would have a double mastectomy; I already knew that I would take chemotherapy and I had already accepted the idea that, if my physicians ordered radiation, that too would be accepted with grace and dignity.  I was a mother, wife, sister, aunt, friend, teacher – I was not going to let cancer beat me without a challenge.  I also had put this entire challenge in God’s hands.  Whatever my outcome was going to be, it was going to be. So I taught my daughters how to be responsible young ladies at a very early age.  They were only 13 and 12 and my son was only 6. They learned how to do laundry, how to cook, how to do basic housecleaning, and how to become more independent with their homework.  These were skills they needed to learn anyway, why not now?

Continue reading

Tags: , ,

Research America Wants YOU to Support Public and Private Sector Investment in Research!

We’ll be live blogging today from the National Health Research Forum: Straight Talk about the Future of Medical and Health Research at Newseum.  Sponsored by Celgene, Johnson & Johnson, Onyx Pharmaceuticals, TEVA, Genentech, University of Maryland School of Medicine, and HudsonAlpha Institute for Biotechnology, we’re pleased to bring you updates from inside the room!

{Note from Editor: our updates below paraphrase speaker comments so that we can share the points being made in real time without the benefit of a recording to verify or use a transcript}

The first panel is titled, “Where will medical research be in 2023?”

We’re underway with our first panel.  Dr Anthony Fauci, Director, National Institute of Allergy and Infectious Diseases, is told that he does a good job of advocating for his division. Has the pendulum shifted away from investment in research?

Dr. Fauci: When you have even a modest increase in a budget, you can preserve the fundamental research activities. But the problem is the budget has been flat for 10 years and inflation takes a bigger toll. As a nation we have to make a commitment that fundamental research should not be part of a discretionary pool.  So any cutting of a budget hits the discretionary pool.  Some people get it and some don’t when we tell this story that basic research is what it is we’ve done for you.  Five years from now we’re not going to be able to tell anyone if we continue to stay flat and not even account for inflation.

John Seffrin, PhD, CEO American Cancer Society: Research America has doubled the NIH budget in a period of five years.  But we haven’t made the case to the public to explain the need for long term investment.  The tsunami of non-communicable diseases coming down the road – we need to convince the public of the need to invest.

France Cordova, PhD, Director, National Science Foundation: Industry gets the need to invest in basic research and advocacy for it, but it seems to be number 10 on the priority list.

Dr. Fauci: I can assure you that no one will stop me and say, with regard to the ebola outbreak, why didn’t we invest more in basic research years ago?  They’ll say: why don’t you have a vaccine now?

Dr. Cordova: We need to make science more accessible, to what I like to call “K to gray.”  With this science is accessible to all ages.

Panel 2: Code Red Again: Can We End the Assault on Public Health Research and Practice

Tom Frieden, MD, MPH, Director, Centers for Disease Control and Prevention: We save $3 for every $1 invested in vaccines, in the health sector alone, and $10 overall…..

Only for this event would I take an hour off from ebola.  The ebola epidemic is worse than is recognized. Reported cases are a small fraction of the total.  Despite maximum efforts – 100 field officers – the largest response in CDC history.  If we had  invested in systems that would find, respond, prevent we could have prevented this disaster…..

Public health is a “best buy.” It keeps us safe and prevents disaster. Every dollar investment in public health pays off.  Ebola, drug resistance – ongoing threats – it will take a funding commitment and partnerships. We at CDC have a partnership with CMS that never existed before.  Public health is the governments responsibility but the government can’t do it alone…..

Handwashing in hospital is not up to par, neither is blood pressure maintenance. We have room to grow in health quality.  Hospital acquired infections are too common…..

The average person can have a big impact on the government. One person is able to change policy. One person made government improve and keep open TB clinics in NY….

With regard to health disparities, high blood pressure and heart attacks is the single largest cause of differences among the races.  The second big issue is teen pregnancy.  These are two areas where intervening makes a huge difference.

Georges Benjamin, MD, Exec Director, American Public Health Association.  The public thinks we have a better protection system than we do….

Seeing your doctor 2-4 times a year is a system where patients think they are staying healthy, but many times this is not effective.  We need to create a better system to keep patients healthy.  Prevention Research should be funded more…..

Saying that you support research, and actually voting to increase or keep funding for research is different.  We need to hold policy makers accountable. Meet with local or state elected officials, with out an agenda, so when you do have an agenda they are more willing to help….

Lynn Goldman, MD, MS, MPH, Dean, Milken Institute School of Public Health, George Washington University:  In the US we feel comfortable that we have systems in place, however it would be possible for a slightly different pathogen to arise that we could not protect ourselves from. We’re doing very little about antibiotic resistant pathogens. We’re not going to be able to control something like that…..

The pay off for the American tax payer is tremendous for increasing vaccinations…..

Richard Kronick, PhD, Director, Agency for Healthcare Research and Quality, HHS: Is there a perception problem? Yes. The public can see that price and accessibility are not perfect, but most people see safety and quality as a non-issue, when it is, especially in less developed countries…..

Where are where failing? What can your organization do better? and in what time frame? This should have been done yesterday.  We need to not only produce evidence, but make sure that this evidence is used.  We have funded work to show how low-income children are overly prescribed anti-psychotics, but we are not able to implement any rules or policies to change this. ….

Jack Watters, MD, VP, External Medical Affairs, Pfizer: The happiest news is that we are all living longer – a cause for celebration. One of the best thing that’s happening is that healthy younger people are living to be healthier older people…..

I see far more appetite for public/private partnerships, in research, in delivering public health. We should recognize that we are all in this together and we must partner more – I welcome the increased appetite……

Seeing a doctor a couple of times per year is better than not at all, but we need to increase contact between all health professionals and patients (nurses and pharmacists)….

We are seeing an improvement in the private sector.  There is a shift in the appreciation to public health by the pharmaceutical industry. Some money is being used for research, but it is harder to convince policy makers for more.  Public health problems are not as “sexy” as proactive research in medicine for uncured/treated conditions…..

There are simple things we can do to increase public health, for example with depression, just asking a person could make a significant difference.

Panel 3: What’s Right – and Wrong – with the Research Ecosystem?

Moderator Margot Sanger-Katz, Health Care Correspondent, The New York Times:

Pablo Cagnoni, MD, President, Onyx Pharmaceuticals: What do you think of the US Research system? We are not moving as quickly as necessary, we could be moving more quickly. From lab to market, the timing is too long.  That being said, we still have the best ecosystem in the world.

The competitive system keeps priorities in the wrong place.

We have to extend Dr Woodcock’s good work to CBER and get companion diagnostic testing approved rapidly.

There are 2 areas where “big data” is playing out. One is in research, more importantly another is in utilization.  Are we utilizing the right drugs with the right patients?

Kathy Giusti, MBA, Founder and CEO, Multiple Myeloma Research Foundation (was unable to make it to the event)

Robert Hugin, Chairman, CEO, Celgene: What do you think of the US Research system? I think that it is a fact that we have the best research system in the world.  Yes we still need to improve, but we always need to. We have a very competitive system, that makes for a great spirit in the science community, and we are always improving. Transational medicine (bringing research to the patients) does not get the visibility, but it is important and appreciated.

We need to provide more economic incentives to collaborate, to avoid redundancies between different research centers. More transparency would help this problem.

Ways to improve- Prevention research by asking for congressional help, more investments.

At $1.5 billion per drug who can sustain this? Something has to change. It’s not sustainable. We must review the system.

With regard to the increasing costs of drugs: I think we look at this in an inappropriate way, the only way we can capture costs is through price. If someone could create a drug that can cure a cancer (and avoid downstream costs), we have to remember that.  The overall impact is very positive. We do a better job than Europe with access.  We should never be embarrassed to talk about it.  Taking cancer for example. In 1970, the cost was 1 percent of spending for oncology drug spending, now it’s at .5 percent.  Remember, the generics didn’t discover those drugs – they wouldn’t have them without our research. Exchange programs discriminate against the working poor – at Fred Hutch, Memorial Sloan Kettering, MD Anderson, people are kept out of those excellent care facilities….CBO says when Rx costs rise, other healthcare costs go down.  We want to talk about Lindsay Lohan and rehab instead of better access to care.  We have this discussion backwards. (Applause)

We are finally able to bring technology to the research because of the high costs. Ten years from now, our lives will be fundamentally different, because of (advances)…

E. Albert Reece, MD, PhD, MBA, Dean, University of Maryland, School of Medicine: What do you think of the US Research system? Our system is very rigorous, and it works very well, but it is not perfect.  Looking at other countries, our research infrastructure is more rigorous, and that is our strength. Our weakness is that we are not sustainable.

Boom or Busts in research, training young people takes a long time, so there is a constant roller coaster in the amount of researchers that we have. The amount of researchers that we needs is constantly changing also.

I agree with Bob, there have to be improvements and legislation to increase efficiencies.

Janet Woodcock, MD, Director, Center for Drug Evaluation and Research, FDA: What do you think of the US Research system? We don’t have the infrastructure necessary to carry the information, that we find through our research, to the American public, and to implement new findings.

Is money being spent in the right way on the right research?  A problem that we have is that a big amount of research is not able to produce the same findings more than once. We need to be more intentional with research. We are trying to change the way that clinical evaluation is done. It is too expensive and not sustainable. We should not have a brand new clinical trial for every single experimental drug, we need to come up with a system that can be reused, and is therefore more sustainable.

How does the regulatory system change the research ecosystem? It creates a lot of challenges, we’re seeing a shift in pharmaceutical research to drugs that depend on genome, more precise medicine. Because this is so new, there are a lot of uncertainties.

Unless we change the cost and drug development process, then we will not keep improving.  We don’t have the right science to actually make the right drugs, only 2/10 drugs even make it to trials. Efficiency needs to change, and this can change through changing the drug manufacturing process.

Our healthcare system is poorly designed when it comes to non-drug interventions. The final translation into practice – we’re trying to look at more patient centered measures to look for ways to benefit through proven, unconventional benefits.

 

Categories: General

Patient of the Month: Alex Defio Shares His Story for Men’s Health/Cancer Awareness Month

Alex Defio did not feel sick on the day he was told he was going to die.

A construction worker and amateur poker player, he considered himself a generally healthy individual. On this day, however, Alex was being dealt a hand that no one should ever have to play; he was diagnosed with stage IV stomach and liver cancer. It was terminal.

Alex Defio

Alex Defio

Alex remembers the doctor advising him – coldly – to return home and seek hospice care for the remaining months he had to live. “It knocked me out. I couldn’t believe anyone was talking to me that way,” Alex recalled. “When you know you’re going to die, when someone tells you the time of death, that is very scary.”

Like many cancer patients, Alex felt fine until he began chemotherapy. Bed-ridden for months, he could no longer work. Although he had been receiving financial assistance from his home state of Arizona, the budget for his program was soon cut.

Alex was able to access social security, but it did not cover everything. He watched his money run out knowing that he would be unable to cover his medical expenses. He tried turning to non-profits and charities, but to no avail. “I’d spent most of my life donating to various [charities] and organizations, but when I went looking for help, everyone told me that I had such a rare cancer that nobody collects money for it,” Alex said. “Every place I went – and I went everywhere – could not give me any help.”

After two years struggling to put what little money he had toward his medical expenses, Alex sought help from his oncologist, Dr. Rakkar.

Dr. Rakkar introduced him to the HealthWell Foundation, a nationwide non-profit providing financial assistance to insured patients who still struggle to afford the medications they need (and sponsor of this blog). Through HealthWell, Alex was finally able to get the help he needed.

Since then, Alex has continued his treatment, which is restricted to chemotherapy. He knows he has not been cured and that surgery is not an option, but he has lived past his original prognosis and is grateful for every day he has.

Alex has continued to give to others and has donated to HealthWell. “I know that after I’m gone, there are still people who are going to need you,” Alex said. “The people that you help – and I’m speaking for people I don’t even know – if they’re cancer patients like me, you’re saving their lives.”

“I try to give back what little I have and hope it helps,” Alex added. “I will never be able to give enough for the help that HealthWell has given me. I am just so thankful you are there for us.”

And we are thankful for you too, Alex. During this Men’s Health/Cancer Awareness Month, we are honored to share Alex’s story and generosity.

How has cancer touched your life? Share your story in the comments section. For more information about seeking assistance from HealthWell, visit www.HealthWellFoundation.org.

Our Top 4 Most ‘Liked’ Health Care Stories

This week is Real World Health Care’s one-year anniversary. Over the past year, we showcased solutions that are proven to lower costs, increase access, and provide more patient-centered care. In celebration of this milestone, we are sharing the favorite posts as measured by Facebook ‘likes’ from our readers, who have visited the blog over 10,000 times.

 

#4 – Keeping Boston Strong: How Disaster Training at Osteopathic Medical School Helped Save Lives

In May, former RWHC editor Paul DeMiglio told the story of Dr. Danielle Deines’ emergency response to the Boston Marathon bombing. Dr. Deines’ education at the Edward Via College of Osteopathic Medicine – Virginia Campus (VCOM) required her to participate in a two-day, mandatory training curriculum on Bioterrorism and Disaster Response Program, which immersed her in real-life disaster training, field exercises and specialized courses.

(Photo courtesy of VCOM)

(Photo courtesy of VCOM)

The day of the bombing, after crossing the finish line, Dr. Deines found herself triaging runners in medical tents to make room for the victims. “The back corner became the most severe triage area, nearest the entrance where the ambulances were arriving,” she said. “I saw victims with traumatic amputations of the lower extremities, legs that had partially severed or had shrapnel embedded, and clothing and shoes literally blown off of victims’ bodies.”

Read the post: http://www.realworldhealthcare.org/2013/05/keeping-boston-strong-how-disaster-training-at-osteopathic-medical-school-helped-save-lives/

 

#3 – Making Life Easier for Patients and Loved Ones: Meet MyHealthTeams

In April, Eric Peacock, Co-founder and CEO of MyHealthTeams, contributed a guest blog about the need for social networks for communities of people living with chronic conditions. These networks allow patients to “share recommendations of local providers, openly discuss daily triumphs and issues, share tips and advice, and gain access to local services,” he wrote.

“Sharing with people who are in your shoes offers a sense of community that can’t be found elsewhere – these are people who know the language of your condition; they understand the daily frustrations and the small triumphs that can mean so much,” he added.

Read the post: http://www.realworldhealthcare.org/2013/04/making-life-easier-for-patients-and-loved-ones-meet-myhealthteams/

 

#2 – When the Health Care Blogger Becomes the Cancer Patient

In August, even as she was still undergoing daily radiation treatments, contributor Linda Barlow shared her personal story of being diagnosed with cancer and the slew of medical bills she faced even though she had insurance.

Linda Barlow

Linda Barlow

“While these out of pocket costs are certainly hard to swallow – I can think of a hundred other things I’d rather spend my money on – for my family, they are doable,” she wrote. “We won’t have to skip a mortgage payment or a utility bill. We won’t have to dip into a child’s college tuition fund. We certainly won’t have to worry about having enough money for food. But I know – from my work on this blog and with its main sponsor, the HealthWell Foundation – that many families living with cancer aren’t so lucky.”

Read the post: http://www.realworldhealthcare.org/2013/08/when-the-health-care-blogger-becomes-the-cancer-patient/

 

#1 – What If You Want Politicians to Get Moving But You Can’t Move?

Neil Cavuto

Neil Cavuto

Last week, Neil Cavuto, Senior Vice President and Anchor, Fox News and Fox Business, contributed a moving guest post about his triumphs over multiple sclerosis (MS) for MS Awareness Week. His deeply personal blog inspired resounding praise in the comments section and 1,300 Facebook ‘likes’.

“If I can pass along any advice at all, it is…to simply never accept a prognosis as is,” he wrote. “Fight it. Challenge it. ‘Will’ yourself over it. Many doctors say it’s a naïve approach to the disease, but attitude counts a lot for me with MS, as it did for me two decades ago when I was battling advanced Hodgkin’s Disease. Then, as now, it was about one day at a time, and staying optimistic and positive all the time.”

Read the post: http://www.realworldhealthcare.org/2014/03/ms-awareness-week/

 

If you would like to suggest a topic, contribute a guest post, or learn more about short-term co-sponsorship opportunities, please contact us at dsheon@WHITECOATstrategies.com. As a blog currently sponsored solely by the HealthWell Foundation, an independent non-profit providing nationwide financial assistance to insured Americans with high out-of-pocket medication expenses, co-sponsorship helps us keep Real World Health Care alive and well as a resource for journalists, health care professionals, policymakers, and patients. Plus, co-sponsorship will increase your organization’s visibility among thought leaders in the health care sphere.

Do you have a favorite Real World Health Care post? Is there something you’d like to see more of? Post to the comments section or tweet at us at @RWHCblog.

Smoking Out Nicotine Addiction: What’s Working in the War on Cigarettes

With CVS Pharmacy’s recent announcement that cigarettes and other tobacco containing products will no longer be sold in its stores, Real World Health Care has been crunching the numbers on the success of anti-tobacco efforts and reviewing recent advances in smoking cessation. Here’s what we’ve found:

  • #1. Smoking still holds the unfortunate distinction of causing more preventable deaths than anything else.
  • 8 million. That’s how many lives have been saved by 50 years of anti-smoking efforts, according to a recent study by researchers from Yale University.

    Jamie Elizabeth Rosen

    Jamie Elizabeth Rosen

  • 19%. That’s the current smoking rate in the U.S., down from a whopping 42% five decades ago when U.S. Surgeon General Luther Terry published the first report on the negative health impacts of smoking.
  • 3,000. The number of young people who still try their first cigarette every day. Almost 700 become regular smokers.
  • 7,600. The number of store locations that will no longer sell tobacco products as a result of CVS’s decision. Under the Tobacco Control Act, the Food and Drug Administration cannot mandate what retailers sell, although interestingly it does have the power to mandate the amount of nicotine in cigarettes in addition to advertising restrictions and general standards for tobacco production

Public consciousness, regulation, and education on the harmful effects of tobacco are all factors in the tremendous progress that has been made in saving lives. The World Health Organization’s global recommendations for tobacco control are known as the MPOWER measures and include the following:

WHO_MPOWER

With the efforts of both public and private sector actors, 2014 could be a watershed year for tobacco control in the U.S. In addition to CVS’s tobacco ban, several new initiatives on the part of the government and private industry have already been announced this year that address components of MPOWER:

  • Earlier this month, the FDA launched a new media campaign targeting youth. “We are addressing one of the biggest public health problems in this country and in the world,” FDA Commissioner Margaret A. Hamburg said. “It’s something the FDA has not really done before in terms of a broad public health campaign of this magnitude but it’s something that we are so pleased to be doing because it matters for health.”
  • Walgreens and GlaxoSmithKline (GSK) Consumer Healthcare announced a smoking cessation initiative. Along with resources to help quit smoking, Walgreens’ new Sponsorship to Quit provides smokers with 24/7 tips and tools, celebrations for milestones, a free consultation and other valuable support systems for smokers in their journey to quit. MinuteClinic also provides online tips, tools and facts to help smokers kick their habits.

Have you or anyone you know succeeded in quitting smoking cigarettes or using other tobacco products? Have you seen an effective campaign against tobacco? Post to the comments section to share your impressions of what works.