Teen Publishes Groundbreaking Paper on Her Own Rare Cancer.


A New York City high school senior, Elana Simon, has identified a genetic alteration that may drive the development of a rare liver tumor, fibrolamellar hepatocellular carcinoma, which usually occurs in teens and young adults.

Simon, 18, was diagnosed with the disease at age 12.

Working with a set of professionals from New York institutions, she identified a lone genetic alteration in 100% of the tumors tested in the study (15/15). Notably, the alteration was not detected in matched normal tissue samples from study patients.

The evidence “suggests that this genetic alteration contributes to tumor pathogenesis,” write the authors, led by Simon and co-first author Joshua Honeyman, MD, of the department of surgery of Memorial Sloan Kettering Cancer Center in New York City.

Their new finding, which was published in the February 28th issue of Science , is a ground-breaking discovery.

“Little is known of [fibrolamellar hepatocellular carcinoma’s] molecular pathogenesis,” the authors write.

Or as Simon said in a video posted online: “Until now no one understood what causes this.”

The newly described genetic alteration, known as DNAJB1-PRKACA chimeric transcript, has not been reported in the literature and is not found in the COSMIC (Catalogue of Somatic Mutations in Cancer) database.

The authors are hopeful that this newly found fusion gene “may represent a diagnostic marker” and a “therapeutic target” for fibrolamellar hepatocellular carcinoma. Currently, there are no molecular diagnostic tests for the disease.

“Now we actually have a potential diagnostic for this cancer, which is great because the key to surviving fibrolamellar is finding it early,” said Simon.

She speaks from experience. Her tumor was completely removed at MSKCC 6 years ago by a team led by Michael LaQuaglia, MD, also a coauthor of the study.

“I was very lucky…I have been fine ever since,” Simon said.

I was very lucky…I have been fine ever since.

Surgery is the mainstay of treatment for this liver tumor, which has a clinical phenotype distinct from conventional hepatocellular carcinoma. The tumors “do not respond well to chemotherapy,” the authors say.

Overall survival is 30%-45% at 5 years.

Simon explained that before undertaking the current study she was an intern at a New York City lab and worked on a genomic analysis of pancreatic cancer. So, she had already cut her teeth in genomics.

“I decided to sequence the genome of my own cancer,” she explained.

I decided to sequence the genome of my own cancer.

Simon has had the good fortune of being born into a scientific family. Her father, Sanford Simon, PhD, the senior author of the paper, is from the Laboratory of Cellular Biophysics at Rockefeller University in New York City.

The Simons and their team performed whole genome and transcriptome sequencing of paired tumor and adjacent normal liver samples. To determine whether there were tumor-specific fusion transcripts among the coding RNA, they used the FusionCatcher program on RNA data from the tumors, metastases, and recurrences of 11 patients. Four more patients’ tumors were tested later, for a total of 15 patients.

“We have found the same change in every patient tested, which strongly suggests that this could be the change that is driving this cancer,’ said the younger Simon in her video.

Simon, who attends The Dalton School in Manhattan, has also helped develop the Fibrolamellar Registry, a Web site for patients who can share their medical information with each other and interested researchers and clinicians, according to a profile in The New Yorker .

Clinicians, computer scientists, and the National Institutes of Health’s office of rare diseases have already agreed to join the project as collaborators.

Nikola Tesla’s amazing predictions for the 21st Century.


In the 1930s journalists from publications like the New York Times and Time magazine would regularly visit Nikola Tesla at his home on the 20th floor of the Hotel Governor Clinton in Manhattan. There the elderly Tesla would regale them with stories of his early days as an inventor and often opined about what was in store for the future.

Photo of Nikola Tesla which appeared in the February 9, 1935 issue of Liberty magazine Read more: http://blogs.smithsonianmag.com/paleofuture/2013/04/nikola-teslas-amazing-predictions-for-the-21st-century/#ixzz2TGsCrQHl  Follow us: @SmithsonianMag on Twitter

Last year we looked at Tesla’s prediction that eugenics and the forced sterilization of criminals and other supposed undesirables would somehow purify the human race by the year 2100. Today we have more from that particular article which appeared in the February 9, 1935, issue of Liberty magazine. The article is unique because it wasn’t conducted as a simple interview like so many of Tesla’s other media appearances from this time, but rather is credited as “by Nikola Tesla, as told to George Sylvester Viereck.”

It’s not clear where this particular article was written, but Tesla’s friendly relationship with Viereck leads me to believe it may not have been at his Manhattan hotel home. Interviews with Tesla at this time would usually occur at the Hotel, but Tesla would sometimes dine with Viereck and his family at Viereck’s home on Riverside Drive, meaning that it’s possible they could have written it there.

Viereck attached himself to many important people of his time, conducting interviews with such notable figures as Albert Einstein, Teddy Roosevelt and even Adolf Hitler. As a German-American living in New York, Viereck was a rather notorious propagandist for the Nazi regime and was tried and imprisoned in 1942 for failing to register with the U.S. government as such. He was released from prison in 1947, a few years after Tesla’s death in 1943. It’s not clear if they had remained friends after the government started to become concerned about Viereck’s activities in the late 1930s and early 1940s.

Tesla had interesting theories on religion, science and the nature of humanity which we’ll look at in a future post, but for the time being I’ve pulled some of the more interesting (and often accurate) predictions Tesla had for the future of the world.

Creation of the EPA

The creation of the U.S. Environmental Protection Agency (EPA) was still 35 years away, but Tesla predicted a similar agency’s creation within a hundred years.

Hygiene, physical culture will be recognized branches of education and government. The Secretary of Hygiene or Physical Culture will be far more important in the cabinet of the President of the United States who holds office in the year 2035 than the Secretary of War. The pollution of our beaches such as exists today around New York City will seem as unthinkable to our children and grandchildren as life without plumbing seems to us. Our water supply will be far more carefully supervised, and only a lunatic will drink unsterilized water.

Education, War and the Newspapers of Tomorrow

Tesla imagined a world where new scientific discoveries, rather than war, would become a priority for humanity.

Today the most civilized countries of the world spend a maximum of their income on war and a minimum on education. The twenty-first century will reverse this order. It will be more glorious to fight against ignorance than to die on the field of battle. The discovery of a new scientific truth will be more important than the squabbles of diplomats. Even the newspapers of our own day are beginning to treat scientific discoveries and the creation of fresh philosophical concepts as news. The newspapers of the twenty-first century will give a mere ” stick ” in the back pages to accounts of crime or political controversies, but will headline on the front pages the proclamation of a new scientific hypothesis.

Health and Diet

Toward the end of Tesla’s life he had developed strange theories about the optimal human diet. He dined on little more than milk and honey in his final days, believing that this was the purest form of food. Tesla lost an enormous amount of weight and was looking quite ghastly by the early 1940s. This meager diet and his gaunt appearance contributed to the common misconception that he was penniless at the end of his life.

More people die or grow sick from polluted water than from coffee, tea, tobacco, and other stimulants. I myself eschew all stimulants. I also practically abstain from meat. I am convinced that within a century coffee, tea, and tobacco will be no longer in vogue. Alcohol, however, will still be used. It is not a stimulant but a veritable elixir of life. The abolition of stimulants will not come about forcibly. It will simply be no longer fashionable to poison the system with harmful ingredients. Bernarr Macfadden has shown how it is possible to provide palatable food based upon natural products such as milk, honey, and wheat. I believe that the food which is served today in his penny restaurants will be the basis of epicurean meals in the smartest banquet halls of the twenty-first century.

There will be enough wheat and wheat products to feed the entire world, including the teeming millions of China and India, now chronically on the verge of starvation. The earth is bountiful, and where her bounty fails, nitrogen drawn from the air will refertilize her womb. I developed a process for this purpose in 1900. It was perfected fourteen years later under the stress of war by German chemists.

Robots

Tesla’s work in robotics began in the late 1890s when he patented his remote-controlled boat, an invention that absolutely stunned onlookers at the 1898 Electrical Exhibition at Madison Square Garden.

At present we suffer from the derangement of our civilization because we have not yet completely adjusted ourselves to the machine age. The solution of our problems does not lie in destroying but in mastering the machine.

Innumerable activities still performed by human hands today will be performed by automatons. At this very moment scientists working in the laboratories of American universities are attempting to create what has been described as a ” thinking machine.” I anticipated this development.

I actually constructed ” robots.” Today the robot is an accepted fact, but the principle has not been pushed far enough. In the twenty-first century the robot will take the place which slave labor occupied in ancient civilization. There is no reason at all why most of this should not come to pass in less than a century, freeing mankind to pursue its higher aspirations.

Cheap Energy and the Management of Natural Resources

Long before the next century dawns, systematic reforestation and the scientific management of natural resources will have made an end of all devastating droughts, forest fires, and floods. The universal utilization of water power and its long-distance transmission will supply every household with cheap power and will dispense with the necessity of burning fuel. The struggle for existence being lessened, there should be development along ideal rather than material lines.

Tesla was a visionary whose many contributions to the world are being celebrated today more than ever. And while his idea of the perfect diet may have been a bit strange, he clearly understood many of the things that 21st century Americans would value (like clean air, clean food, and our “thinking machines”) as we stumble into the future.

FDA Approves Anoro Ellipta to Treat COPD


A new inhaled drug to treat a serious lung condition called chronic obstructive pulmonary disease (COPD) has been approved by the U.S. Food and Drug Administration.

GlaxoSmithKline‘s Anoro Ellipta is meant to be used once a day for long-term maintenance of airflow in patients with COPD. The lung disease makes breathing difficult and worsens over time.

“Anoro Ellipta works by helping the muscles around the airways of the lungs stay relaxed to increase airflow in patients with COPD,” Dr. Curtis Rosebraugh, director of the Office of Drug Evaluation II in the FDA’s Center for Drug Evaluation and Research, said in an agency news release.

“The availability of new long-term maintenance medications provides additional treatment options for the millions of Americans who suffer with COPD,” he added.

Dr. Len Horovitz, a pulmonary specialist at Lenox Hill Hospital in New York City, said the new medication is a “unique combination” of two drugs presently used for COPD. “It combines a drug similar to Spiriva and a [long-acting beta agonist] as found in Advair, he said. “There is no steroid in Anoro Ellipta.”

According to the FDA, Anoro Ellipta combines umeclidinium, a drug that prevents muscles around the large airways from tightening, and vilanterol, which improves breathing by relaxing the muscles of the airways to allow more air to flow into and out of the lungs.

Another lung specialist, Dr. Charles Powell, called the approval a “promising development for patients with COPD,” noting other countries already allow this type of medication.

“Combined long-acting bronchodilators are available in Europe. Now we have the first approved combined long-acting bronchodilator medication available in the U.S.,” said Powell, who is chief of pulmonary, critical care and sleep medicine at the Mount Sinai – National Jewish Health Respiratory Institute in New York City.

“Combining two effective bronchodilators can result in improved lung function and medication compliance compared to traditional COPD inhaled medications,” Powell said.

The FDA approval is based on findings from more than 2,400 people with COPD. The results showed that those who took the drug had greater improvements in lung function than those who took a placebo. The most common side effects reported by patients who took Anoro Ellipta included sore throat, sinus infection, lower respiratory tract infection, constipation, diarrhea, pain in extremities, muscle spasms, neck pain and chest pain.

Serious side effects that can be caused by the drug include narrowing and obstruction of the airway, cardiovascular effects, increased pressure in the eyes, and worsening of urinary retention.

Anoro Ellipta is not approved for asthma treatment and should not be used as a rescue treatment for sudden breathing problems, the FDA said. The drug carries a boxed warning that the class of drugs that vilanterol belongs to increases the risk of asthma-related death.

“Patients with COPD need to be seen and examined before determining the appropriate use of this drug, as with any medication,” added Horovitz.

Cigarette smoking is the main contributor to COPD, which is the third leading cause of death in the United States. Symptoms can include chest tightness, chronic cough and excessive phlegm.

Insomnia Cure Boosts Success of Depression Treatment.


reating persistent insomnia at the same time as depression could double the chances that the mood disorder will disappear, a new study shows.

Doctors have long reported a link between insomnia — the inability to sleep — and depression, but many thought that depression led to insomnia. Now, experts suspect sleep problems can sometimes precede depression.

If other ongoing studies confirm these results, it might lead to major changes in depression treatment, experts added. Such changes would represent the biggest advance in depression treatment since the antidepressant Prozac was introduced in 1987, The New York Times reported.

“The way this story is unfolding, I think we need to start augmenting standard depression treatment with therapy focused on insomnia,” Colleen Carney, lead author of the small study, told the Times.

The study was funded by the U.S. National Institute of Mental Health.

The insomnia treatment relied on talk therapy, rather than sleep medication, for 66 patients.

Insomnia and depression are both common problems, and often interact, explained Dr. Steven Feinsilver, director of the Center for Sleep Medicine at Mount Sinai School of Medicine in New York City. He was not involved in the study.

“Clearly, poor sleep can cause depression and depression can cause poor sleep,” he said.

Evidence does exist that for many people, symptoms of insomnia precede symptoms of depression by a few years, Feinsilver noted. “This could be taken to mean either that insomnia causes depression or that insomnia is the earliest symptom of depression,” he said.

This study may help untangle that relationship. It “suggests that specifically treating the insomnia with behavioral techniques can substantially improve the outcome of patients with depression,” Feinsilver added.

For the millions of people with depression, the findings offer a ray of hope.

“This relatively simple technique for treating insomnia could be tremendously helpful for those with this common psychiatric illness,” Feinsilver said.

More than 20 million Americans suffer from depression — disabling feelings of sadness and despair that don’t go away, according to the U.S. National Library of Medicine. More than half of those with depression also suffer from insomnia.

The research team, from Ryerson University in Toronto, found depression lifted significantly among patients whose insomnia was cured. The insomnia treatment consisted of four talk therapy sessions over eight weeks, according to the Times.

During the sessions, patients were given certain instructions: set a specific wake-up time and don’t veer from it; get out of bed when awake but don’t eat, read or watch TV; and refrain from taking any daytime naps.

Almost 90 percent of patients who responded to the insomnia therapy also saw their depression lift after taking an antidepressant pill or an inactive placebo for two months. That was about double the rate of those who could not shake their sleeplessness, the news report said.

Study participants had to have had a month of sleep loss that had an effect on their jobs, family life or other relationships.

A smaller pilot study conducted at Stanford University produced similar findings, the Times reported.

Carney was to present the latest research Saturday at a conference of the Association for Behavioral & Cognitive Therapies, in Nashville, Tenn., the newspaper reported.

Research presented at meetings should be viewed as preliminary until published in a peer-reviewed medical journal.

US moves to ban trans fats in foods


US food safety officials have taken steps to ban the use of trans fats, saying they are a threat to health.

Trans fats, also known as partially hydrogenated oils, are no longer “generally recognised as safe“, said the Food and Drug Administration (FDA).

The regulator said a ban could prevent 7,000 deaths and 20,000 heart attacks in the US each year.

The FDA is opening a 60-day consultation period on the plan, which would gradually phase out trans fats.

“While consumption of potentially harmful artificial trans fat has declined over the last two decades in the United States, current intake remains a significant public health concern,” FDA Commissioner Margaret Hamburg said in a statement.

“The FDA’s action today is an important step toward protecting more Americans from the potential dangers of trans fat.”

‘Industrially produced ingredient’

If the agency’s plan is successful, the heart-clogging oils would be considered food additives and could not be used in food unless officially approved.

The ruling does not affect foods with naturally occurring trans fats, which are present in small amounts in certain meat and dairy products.

Foods containing trans fat

Trans fat label
  • Some processed baked goods such as cakes, cookies, pies
  • Microwave popcorn, frozen pizza, some fast food
  • Margarine and other spreads, coffee creamer
  • Refrigerator dough products such as cinnamon rolls

Source: US Food and Drug Administration

Artificial trans fats are used both in processed food and in restaurants as a way to improve the shelf life or flavour of foods. The fats are created when hydrogen is added to vegetable oil, making it a solid.

Nutritionists have long criticised their use, saying they contribute to heart disease more than saturated fat.

Some companies have already phased out trans fats, prompted by new nutritional labels introduced in 2006 requiring it to be listed on food packaging.

New York City and some other local governments have also banned it.

But trans fats persist primarily in processed foods – including some microwave popcorns and frozen pizzas – and in restaurants that use the oils for frying.

According to the FDA, trans fat intake among Americans declined from 4.6g per day in 2003 to around 1g per day in 2012.

Generic picture of overweight man

The American Heart Association said the FDA’s proposal was a step forward in the battle against heart disease.

“We commend the FDA for responding to the numerous concerns and evidence submitted over the years about the dangers of this industrially produced ingredient,” said its chief executive, Nancy Brown.

Outgoing New York Mayor Michael Bloomberg, who led the charge to ban trans fats in that city, said the FDA plan “deserves great credit”.

“The groundbreaking public health policies we have adopted here in New York City have become a model for the nation for one reason: they’ve worked,” he said.

Coronary Risk Varies by Breast-Cancer Radiotherapy Technique.


Estimated 20-year risk of “major coronary events” stemming from radiotherapy of early-stage breast cancer was highly dependent on whether therapy was delivered from the right or left side, with the patient in the supine or prone position, and especially on patient baseline cardiovascular risk status, in a small prospective study[1].

Left-sided radiotherapy in supine-positioned patients, especially those with high baseline risk status, posed the greatest risk in the analysis. Prone-positioned patients treated from the right side (the fields exclude the heart), especially those with low baseline risk, had the lowest estimated risk. The analysis from Dr David J Brenner(Columbia University Medical Center, New York, NY) and colleagues is published online October 28, 2013 as a research letter in JAMA Internal Medicine.

In light of the pronounced effect of Reynolds-score baseline risk status on late coronary risk, the group proposes that “radiotherapy-induced risks of major coronary events [would] likely to be reduced in these patients by targeting baseline cardiac risk factors (cholesterol, smoking, hypertension), by lifestyle modification, and/or by pharmacological treatment.”

The group estimated risks related to radiation dosing by direction and body position based on a historical series of women receiving breast radiotherapy from 1958 to 2001. They prospectively applied those estimates to two radiotherapy treatment plans, based on the patient in supine and prone positions, devised for 48 women with stage 0 through IIA breast cancer.

Their findings:

  • Estimated mean cardiac radiation dose from the left side was 2.17 Gy with the patient in the supine position and 1.03 Gy for the patient in prone position.

  • With right-sided radiation, estimated doses were 0.62 Gy and 0.64 Gy for supine and prone positioning, respectively.

  • For treatment from the right or left side, the excess risk of coronary events (MI, coronary revascularization, death from ischemic heart disease) rose with rising baseline CV risk.

  • For treatment from the left side, prone vs supine positioning consistently lowered coronary risk, regardless of baseline risk.

  • For treatment from the right side, the excess coronary risk was similar for supine and prone positioning at each baseline-risk level.

  • Differences in radiotherapy side and body position most influenced coronary risk among patients with a high baseline risk.

Estimated Patient-Averaged Lifetime Excess Coronary Risk (95% CI) Associated with Contemporary Breast Cancer Radiotherapy, by Baseline CV Risk

Radiation delivery, body position Low baseline CV risk High baseline CV risk
Left side, supine 0.22 (0.08–0.36) 3.52 (1.47–5.85)
Left side, prone 0.09 (0.05–0.13) 1.31 (0.86–1.86)
Right side, supine 0.05 (0.03–0.07) 0.79 (0.57–1.06)
Right side, prone 0.06 (0.03–0.08) 0.84 (0.57–1.18)

*Coronary risk=20-year risk of MI, coronary revascularization, or death from ischemic heart disease

“In breast-cancer radiotherapy today, there is considerable variability in the dose received by the heart and in the extent of preexisting risk of ischemic heart disease. Thus, there is likely to be considerable variability in the cardiac risks of radiotherapy,” write Drs Carolyn Taylor and Sarah C Darby (University of Oxford, UK) in an accompanying commentary[2]. It was their group’s analysis of historical data on which the current dosing-risk estimates were based.

“Our dose-response relationship can be used to provide reassurance for the majority of women that their absolute risk of ischemic heart disease from breast-cancer radiotherapy is likely to be small compared with the likely absolute benefit from radiotherapy. It can also be used to identify the minority of women for whom the benefits of radiotherapy do not clearly outweigh the risks, including those for whom adequate coverage of the target tissue cannot be achieved without a high heart dose.”

United Nations to Adopt Asteroid Defense Plan.


Earth is not prepared for the threat of hazardous rocks from space, say astronauts who helped formulate the U.N. measures.

Illustration of asteroid impacting earth

When a meteor exploded over Chelyabinsk, Russia in February, the world’s space agencies found out along with the rest of us, on Twitter and YouTube. That, says former astronaut Ed Lu, is unacceptable—and the United Nations agrees. Last week the General Assembly approved a set of measures that Lu and other astronauts have recommended to protect the planet from the dangers of rogue asteroids.

The U.N. plans to set up an “International Asteroid Warning Group” for member nations to share information about potentially hazardous space rocks. If astronomers detect an asteroid that poses a threat to Earth, the U.N.’s Committee on the Peaceful Uses of Outer Space will help coordinate a mission to launch a spacecraftto slam into the object and deflect it from its collision course.

Lu and other members of the Association of Space Explorers (ASE) recommended these steps to the U.N. as a first step to address at the long-neglected problem of errant space rocks.  “No government in the world today has explicitly assigned the responsibility for planetary protection to any of its agencies,” ASE member Rusty Schweickart, who flew on the Apollo 9 mission in 1969, said at the museum. “NASA does not have an explicit responsibility to deflect an asteroid, nor does any other space agency.” The ASE advocates that each nation delegate responsibility for dealing with a potential asteroid impact to an internal agency—before the event is upon us.

The next step in defending Earth against dangerous asteroids is to find them, Lu said. “There are 100 times more asteroids out there than we have found. There are about 1 million asteroids large enough to destroy New York City or larger. Our challenge is to find these asteroids first before they find us.”

Early warning is important because it increases the chance of being able to deflect a threatening asteroid once it is found. If a spacecraft struck an asteroid 5 or 10 years before the rock was due to hit Earth, a slight orbital alternation should be enough to make it pass Earth by; if the asteroid wasn’t detected soon enough, evacuating the impact zone may be the only option available. “If we don’t find it until a year out, make yourself a nice cocktail and go out and watch,” Schweickart quipped.

The B612 Foundation, a non profit Lu founded to address the problem of asteroid impacts, is developing a privately funded infrared space telescope called Sentinel, which it hopes to launch in 2017. The telescope would begin a systematic search for hazardous near-Earth objects.

The ASE astronauts are also asking the United Nations to coordinate a practice asteroid deflection mission to test out the technologies for pushing a rock off course should the need arise. The meteor in Chelyabinsk, which injured 1,000 people but killed none, was an ideal warning shot across the bow, said American Museum of Natural History astronomer Neil deGrasse Tyson, who hosted Friday’s event—now, it’s time for Earth’s citizens to take action.  Lu agreed: “Chelyabinsk was bad luck,” he said. “If we get hit again 20 years from now, that is not bad luck—that’s stupidity.”

‘My diagnosis hit me in the face’: readers on living with breast cancer.


The rosy glow of ‘Pinktober‘ is everywhere this month, so we asked Guardian readers how cancer has changed their lives

‘I had chemotherapy during my last two trimesters of pregnancy’

Heidi, breast cancer patientHeidi, 44, Indiana

I was pregnant when diagnosed with breast cancer, and had chemotherapy during my last two trimesters of pregnancy. I’ve had lumpectomies, a mastectomy, reconstruction, oophorectomy, chemotherapy, radiation, and have taken more medicine than I can remember. My son was born healthy, strong and very handsome, in spite of his dangerous start. He is wonderful. Chronic pain and fatigue are constant reminders of my cancer, but knowing I persevered for someone other than myself is the greatest reward.

On ‘Pinktober’: To me, the positive comes from helping other people going through this journey – women, men, children. When one person in a family is diagnosed, they all play a part in what happens after diagnosis. Friends, colleagues or church members all want to help, but are sometimes unsure what to do. I’ve found great comfort in helping people identify those needs.

Also, not all charities actually care about breast cancer patients. Some, horribly, only see cancer as a business model or a strategic plan to help boost product sales or worse, careers. People need to diligently research where their money is going, and if it actually helps patients.

‘Two experiences with breast cancer: my wife’s and my own’

Oliver, breast cancer patientOliver, 47, Houston, Texas

I have two experiences with breast cancer: as caregiver for my wife as she went through treatment six years ago, and my own diagnosis and treatment starting in September 2012. We had near-identical treatments: six months of chemo, mastectomy and then radiation, followed by years of Tamoxifen. Of course the odds of this are small. Sharing this experience has brought us closer in an unexpected way, and we understand each other’s fear of recurrence completely.

On ‘Pinktober’: The stark reality of what breast cancer means to many people gets lost [in awareness campaigns.] The focus is on early stage disease in women, with relatively easy treatment and good outcomes. People are invited to celebrate cancer. For many it is a threat to their well being, even their life. Male breast cancer, metastatic breast cancer, triple negative breast cancer, inflammatory breast cancer and breast cancer in young women all get lost.

‘I tested positive for the BRCA gene mutation’

Lori, breast cancer patientLori, 46, New York, New York

I was diagnosed with breast cancer on 28 March 2011. The tumor was in my left breast and was an invasive ductal carcinoma that was 3.5cm long, Estrogen, Progesterone and HER positive, stage IIB. The only reason I even knew something was wrong was that I had pain in my left breast. I went to the doctor who referred me to a radiologist. I was given a mammogram, an ultrasound and a very, very painful biopsy. After a very long weekend, I was told by phone that I had cancer.

I was presented with three options: a lumpectomy, a single mastectomy, or double mastectomy. The deciding factor would be a test for the BRCA gene mutation, but this would delay any action by at least two weeks. After careful consideration that day, I opted for a double mastectomy. I joked that I had wanted a breast reduction anyway and that it should be a matching pair, but honestly, I had a strong suspicion about how the test would turn out since Ashkenazi (eastern European) Jews, of which I am one, have the highest risk of being a carrier. As it turned out, I was right.

A few nights before the double mastectomy, I decided that the only way to decimate a bully (cancer) is to laugh at it. So I invited my friends to my “Bye Bye Boobies” Party. We spared no insult to the boobies that were making my life hell. A Triple-D red velvet cake, lots of dairy products and a song, set to “Bye Bye Baby” to wish them boobies a long goodbye.

On ‘Pinktober’: It misses the actuality of what breast cancer really is. Pink ribbons infantilize the disease and make it appear to be cute – “Pretty in Pink“. There is nothing about breast cancer that is pretty or pink. More information needs to get out to the public about the genetic factors and environmental factors that cause breast cancer and how we need to address these in a way to put people out of harm’s way.

‘I began to think about this as a journey of silver linings’

Ljuba, breast cancer patientLjuba, 31, Cupertino, California

My breast cancer diagnosis hit me straight in my face. I had given birth to beautiful twin girls nine months prior. Saying that my husband and I had our hands full would be putting it mildly. I got “the call” while being told about a potentially necessary skull surgery for one of my twin daughters. “Do you have some time to talk?” my doctor asked. I knew it before she talked me through the rest. My husband knew just by looking at my face. Talk about curveballs.

Me? Now? I was 31, too young for any routine screening. With two babies and a very aggressively growing tumor. One week it measured at 1cm, three weeks later it was estimated at 4cm. The next couple of weeks revolved around waiting for more tests and appointments, while feeling and seeing the mass in my breast grow. This was my rock bottom. It could only get better from there.

But this is where the unexpected part came in.

My daughter didn’t need the surgery after all and I was referred to one of the best cancer centers in the US. The first word that I heard from my oncologist was “curable”. I was surrounded with a team of doctors, surgeons, nurses, dieticians and genetics specialists. I received my first chemotherapy and suddenly began to think about this as a journey of silver linings. An aggressively growing tumor also meant in my case that it was “hungry” and thus eagerly absorbing the chemo. It was half its size after two treatments. The fast metabolism of a young and otherwise healthy body initially caused the cancer to grow quickly, but on the flip side mastered the task of coping with the side effects of the nuclear cocktails injected into my veins.

I lost my hair and started wearing a wig. Getting ready in the morning became a piece of cake. No endless manoeuvring of styling tools and products – perfect salon hair in seconds. My nails stopped growing and manicures would last for weeks. I had a double mastectomy a month ago and am in the process of plastic reconstruction. I can choose my bra cup size and these babies will never sag – what’s not to like? Sure, there were plenty of “one step forward, two steps back” moments in my journey and I am not at the finish line quite yet, but focusing on maintaining a sense of normalcy in my life (I worked part-time, taking days off for treatment, and most of my colleagues still don’t know of my diagnosis) helped me to get through this. But at the core of everything were the silver linings. They will continue to carry me to the last page of this chapter of my life.

On ‘Pinktober’: While I support awareness initiatives, especially for serious illnesses, breast cancer awareness month here in the US has a slightly foul aftertaste of what we call a Hallmark holiday. Pink ribbons on everything from yogurt to toilet paper. A potentially lethal and devastating disease reduced to a sparkly bumper sticker. And while I am thrilled that a percentage of these funds goes towards research, I can’t get rid of this foul aftertaste.

‘I never had a breakdown cry or questioned why’

Amy, breast cancer patientAmy, 39, Huntsville, Alabama

I found out in April, at age 38, that I had breast cancer. I never had a breakdown cry or questioned why. Surprise! Not even once! It’s not because I’m unaware of how serious cancer is, nor is it because I’m in some denial of what I have or what I could lose. It’s not because I’m especially strong or fearless.

I believe it helps that I look at the entire process through the eyes of acceptance and think about what I’m gaining. I accept that I have cancer and the possible outcomes. I accept that it does not define me. I will gain knowledge and experience from having cancer, as well as gain the ability to display my beliefs and principles, and set a good example for my children and family. I believe the most important life lessons don’t come from easy paths; it’s the struggles that show us what we’re made of.

Cancer throws you into a new world, one that can be consumed by your own existence, pain, and treatment. Finding a way to step outside of yourself and look beyond your own cancer is beneficial. There is good in making time and focusing on others, because someone else always has it worse.

When I look around during any chemotherapy treatment, I see that it could be worse: someone younger, someone older, someone suffering more, someone suffering alone … the list goes on. I have spent every one of my chemo sessions talking to the nurses, doctors and volunteers that come my way. I try to remember something personal about them for when I see them again. I have joked and teased with my chemo buddies and tried to make them laugh and feel better, because often I see how lucky I am when I’m there. I see people of all ages afraid, unsure and worried. I feel fortunate by getting to know someone and find a way to get a smile or laugh out of them, and most of the time I do. That is a gift for me!

Cancer does not define me, how I handle cancer defines me. I am going to keep my crazy positive outlook and feel fortunate that I have the ability to fight cancer.

‘I had to learn to shut out the opinions of other people’

Lana, 52, Denver, Colorado

I had stage two triple negative breast cancer, no metastases. Several friends and family members were mortified that I was going to have chemotherapy. They insisted I should try alternative therapies or homeopathic remedies rather than “put poison in my body”. I know those comments came from a place of fear and love for me, but I soon learned to shut out the opinions of other people and march on with the course of treatment my oncologist told me was the only option to kill “the monster.”

No one really knows what it’s like to have cancer, unless they’ve had cancer. That’s the bottom line. We all do what we have to do, individually, to face it, fight it and move on.

On ‘Pinktober’: There seems to be an ever-growing perception (through marketing messages) that we have control over our bodies and can avoid getting cancer. In turn, that translates to many of us as “if you got breast cancer, you must have done something to get it” – ate too much sugar; had a lousy diet; didn’t exercise, etc. There are many of us out here who did everything right (diet, exercise) and got cancer anyway.

I call it The Cancer Crap Shoot. We don’t carry the identified genes and don’t have a family history. So, I think the emphasis needs to be on empowerment: early detection, learning your risk factors and demanding screening (particularly for women 40 and younger if you are at high risk), and even bypassing traditional diagnostics (going straight to MRI or whole-breast ultrasound if you have dense breast tissue).

Yes, diet and exercise are important, however, other physiological factors have been determined to impact risk and women should be educated about them as well (inflammation; keeping your immune system healthy; learning healthy ways of coping with stress).

‘Damage was done to my brain’

Anne Marie, breast cancer patientAnne Marie, New York, New York 

It has been very difficult for me to accept the limitations caused by whatever damage was done to my brain. I was always super organized and could multitask without any issues. Now, I’m lucky if I pay my bills on time.

Realizing I can’t accomplish half of what I could in the past is disappointing, but the fact that I was forced to change directions from office management to writing has been fulfilling in ways I could not have dreamed possible. I try to focus on the fact that I am doing something I love.

On ‘Pinktober’: Breast cancer research has seen many successes over the past decades. Yet, when it is broken down and really examined, we haven’t made the great strides that are hyped, especially during October as we are strangled by pink ribbons.

Treatment is still barbaric. The fact that early detection doesn’t guarantee the disease won’t spread outside the breast is rarely spoken about. The fact that the death rate is substantially unchanged in over 40 years is another problem. Breast cancer is not the great success story it’s hyped to be, it’s just the one that’s been marketed the best.

Older Workers Should Think Young.


It Can Help Deal With Young Co-Workers and Younger Bosses

At age 42, Shona Sabnis is one of the “older” workers in the New York office of public-relations firm Edelman. Though she prides herself on being able to get along with most people, she is sometimes puzzled by the actions of her 20-something co-workers who, in turn, don’t understand why the senior vice president of public affairs likes to distribute physical newspaper clippings.

Peter Ferguson

While dealing with a situation at the office, Ms. Sabnis was told by a junior co-worker that she should be handling her client differently. It wasn’t phrased as a suggestion, which surprised her since she knew the co-worker wasn’t that familiar with the account.

She later enlisted a 26-year-old co-worker to help her to get a better sense of where her young co-workers are coming from. He told her about the motivations of individual co-workers and what their expectations were. “I found that I was projecting my reality when I was that age on them and their reality seems very different,” says Ms. Sabnis. “I don’t always assume anymore that I know what they want. Now I ask them if I need to know.” Ms. Sabnis says she feels that she is now able to deal with young co-workers with more understanding.

With as many as four generations bumping elbows in the same office, a lack of understanding and empathy between groups can generate serious workplace tension that can alienate co-workers. That is why experts say that getting into a young mind-set through mentorships and relationship building can help older workers better identify with young co-workers and—inevitably—younger bosses. Thinking young can also offer valuable insight into emerging millennial workplace and customer trends that can help to extend careers. Especially since millennials—people born between 1981 and the early 2000s—will make up 36% of the American workforce by next year, estimates the Business and Professional Women’s Foundation.

Start with a clean slate. Don’t let stereotypes color your perception of young co-workers. People tend to act on their beliefs, which makes it difficult to establish productive workplace relationships if you automatically believe, for example, that all 20-somethings are narcissistic or lazy, says Ellen Langer, a professor of psychology at Harvard University who’s written books on successful aging and decision-making.

“People think they should be compromising or tolerant of certain behaviors but, instead, we should be understanding. It is more important to be mindful of an individual’s motivations. Make sense of why people do what they do,” says Ms. Langer. “You might drive behind somebody that is driving slow and be angry because they’re old. But in reality, that individual might be driving as fast as they are capable and it could be dangerous to do otherwise. If you saw what they saw, you’d probably respond the same way.”

Catch up on things that you feel like you’re falling behind on by participating in a reverse mentorship or group training. Many companies will pair an older employee with a younger employee who can offer fresh insight on technology, communication styles and social media as well as offer inside insight into the needs of other young co-workers, says Lisa Orrell, a workplace consultant from San Jose, Calif., who specializes in generational management. “The reverse mentorship can also give insight into the new generation of buyers and decision makers who are also millennials. Social-media channels [are] how they are all communicating, collaborating and doing research on what to buy.”

Keep an open mind about organizational shifts that companies will be making to accommodate new modes of working. Millennials enjoy working in collaborative and decentralized work environments, for example, that de-emphasize protocol and hierarchy. This may include a more open workplace culture that encourages frequent communication and unprecedented outspokenness, says Ms. Orrell.

Don’t dwell on the past at the office or talk about how things used to be unless you’re using past accomplishments to bolster present and future goals, says Russ Hovendick, president of Client Staffing Solutions in Sioux Falls, S.D. “Your young co-workers are in the early stages of their careers and motivated by what’s happening now. They’re not thinking about retirement—nor should you out loud when you’re trying to put yourself into a relevant context.”

You want to relate to interviewers and hiring managers that you have plans for the future and aren’t just looking for someplace to hole up until retirement.

Methodological and Policy Limitations of Quantifying the Saving of Lives: A Case Study of the Global Fund’s Approach.


Summary Points

·         A recent trend in global health has been a growing emphasis on assessing the effectiveness and impact of specific health interventions.

·         For example, it has been estimated that 8.7 million lives were saved between 2002 and mid-2012 by “Global Fund–supported programmes” (as distinct from The Global Fund alone) through antiretroviral therapy (ART); directly observed tuberculosis treatment, short course (DOTS); and distribution of insecticide-treated mosquito nets (ITNs).

·         This paper assesses the methods used by The Global Fund to quantify “lives saved,” highlights the uncertainty associated with the figures calculated, and suggests that the methods are likely to overestimate the number of “lives saved.”

·         The paper also discusses how the attribution of “lives saved” to specific programmes or actors might negatively affect the overall governance and management of health systems, and how a narrow focus on just ART, DOTS, and ITNs could neglect other interventions and reinforce vertical programmes.

·         Furthermore, the attribution of “lives saved” to Global Fund–supported programmes is potentially misleading, because such programmes include an unstated degree of financial support from recipient governments and other donors.

Discussion

This paper argues that the number of “lives saved” that are attributed to Global Fund–supported programmes is not as certain as has been suggested by The Global Fund, and is likely to be an overestimate. Furthermore, estimating the “lives saved” by Global Fund–supported programmes is confusing and potentially misleading, because such programmes include a considerable but unstated amount of financial support from other sources. Finally, a number of potentially negative policy effects are associated with the selective impact estimation of downstream clinical interventions.

While this paper focuses on The Global Fund, the issues raised here apply to other global health partnerships and international donor agencies that are increasingly under pressure to quantify the health impact of their investments. The methods for estimating and attributing “lives saved,” and the consequences of doing so, should be questioned and subjected to critical debate.

In the case of The Global Fund, for a start, greater clarity and explanation about the assumptions and generalisations of the methods are required; this should include publication of uncertainty ranges and of disaggregated estimates of “lives saved” for each of the three interventions and for each year. The Global Fund should also conduct and publish sensitivity analyses, particularly in relation to treatment effectiveness, and publish estimates of “lives saved” through DOTS based on alternative counterfactual scenarios.

If the health impact of ART, DOTS, and ITNs is to be estimated in the form of “lives saved,” we argue that this should not be done as an exercise focused on individual external agencies, but rather on the collective contributions of governments and development partners within countries. This would confer a number of benefits. First, the monitoring of service delivery outputs and the estimation of their health impact would be linked to an assessment of the performance of national health systems (a more appropriate unit for assessment) and the degree to which development partners are working in harmonisation with each other and in alignment with ministries of health and their national plans and priorities. This would help shift more attention towards the strengthening of integrated national plans and information systems.

Second, holistic assessments of service delivery results and health improvement at the country level would allow for a context-based analysis of performance, including assessments of efficiency and equity. This would be aided by cross-country comparisons that would reveal variations in effectiveness (and efficiency) of ART, DOTS, and ITNs that arise from differences in, amongst other things, access to health care, quality of care and treatment adherence, and population coverage of nonclinical determinants of health such as access to clean water and nutrition. By describing this variation, policy attention can be directed not just at the delivery of selected clinical interventions, but also at the social, economic, and environmental conditions that influence the degree to which those interventions are effective. This stands in marked contrast to a modelling approach that assumes standardised levels of effectiveness across countries or regions.

Third, estimates of “lives saved” at the country level might be more valid and less uncertain because they would be derived from more appropriate and country-specific modelling assumptions, and because it would motivate countries to improve the quality of their data. In addition, it could stimulate other actors within countries, such as parliamentary health committees, universities, and local nongovernmental organizations, to develop the capacity to scrutinise the performance of the health system. While many countries produce annual health reports, health needs assessments, and national health plans, which provide some description of progress in the health sector, they are often incomplete or weak. Subnational analyses are frequently absent or superficial; and the fragmented and piecemeal nature of reporting systems, encouraged by vertical and donor-driven DAH, still undermines the development of coherent planning, budgeting, management, and information systems.

While an estimate of “lives saved” by ART, DOTS, and ITNs at country level would still be limited by its narrow focus on three interventions, it would provide a platform for monitoring and evaluating other aspects of HIV, TB, and malaria programmes and be more easily incorporated into a national system of data collection and evaluation that takes into account a wider package of health systems inputs, processes, and outputs, enabling policy makers and planners to consider the importance of investments that do not have a measurable or immediate mortality impact.

If individual external agencies need to estimate their specific contribution to “lives saved,” this could be done more simply by apportioning a share of a country’s estimated number of lives saved on the basis of their proportional financial contribution to THE or total HIV/AIDS, TB, and malaria programme financing. This would provide a more meaningful assessment of the contribution of individual agencies, avoid double-counting in reported estimates of “lives saved” by external agencies, and incentivise external agencies to promote coherent national health planning and reporting.

Many of these recommendations  are applicable to external agencies in general. However, since 2012, The Global Fund has been providing more active support for detailed national evaluations of programme performance and impact, and more accurate measures of disease incidence, prevalence, mortality, and morbidity in 20 to 25 “high-impact” countries. This provides it with an opportunity to shift emphasis away from estimating “lives saved” by individual interventions and donor-supported programmes, towards an assessment of health systems performance and impact that incorporates all major actors, programmes, and interventions, and a fuller assessment of the contribution of social, economic, and other upstream determinants of health.

Source:PLOS

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