Mesothelioma Cancer Alliance Scholarship Winner Termeh Khoshniat

 

Mesothelioma Cancer Alliance Scholarship Winner: Termeh Khoshniat

We are thrilled to announce the third recipient of the Mesothelioma Cancer Alliance Scholarship: Termeh Khoshniat.

In 2008, when Termeh was 16 years old, her mother became severely ill. After years of tests, deteriorating health, and multiple diagnoses, her mother was officially diagnosed with stage II mesothelioma in 2013. From that day forward, Termeh became her mother’s sole, state-appointed caretaker. Her story of courage and perseverance left us humbled and speechless.

As her mother’s caregiver, Termeh bore witness to a devastating journey of cancer treatments, including multiple aggressive surgeries and chemotherapy. While her mother became physically weaker, Termeh was forced to grow stronger. Despite her strength, she struggled with the emotional exhaustion of it all. As she writes in her moving essay, she felt “the fear of losing her, the desperation to have more time with her and to learn more from her before she was gone, the worry that I had no idea what I would do without her.”

In addition to her internal struggle, Termeh’s school work began to suffer, but she pushed forward to college. As she tried managing her studies at UCLA, Irvine while also returning to LA to take care of her mother, others began to tell her that she would not be able to achieve her lifelong dream of becoming a doctor. As her family became saddled with medical bills and her mother’s health and her own future uncertain, Termeh was diagnosed with severe anxiety and depression.

This time, Termeh was forced to start taking care of herself: “I began getting treatment on my own, [and] putting my life back together for [both myself and] my mother.” While working to heal herself, Termeh also began visiting under-resourced countries and teaching children about the risks of cancer.

Now, Termeh is determined to continue helping others with a career in medicine and wants to be a role model for women everywhere, the way her mother has been to her. She writes, “The struggles in my life have made me grow as a person and have solidified my interest in a career in medicine. I have become a stronger woman, and I believe in myself more than ever. [...] I want to show [my mother] that through all the struggles we both have undergone, there is still hope to be had in this world.”

As the winner of the Mesothelioma Cancer Alliance Scholarship, Termeh will receive $4,000 toward her education expenses. The Mesothelioma Cancer Alliance is beyond inspired by Termeh’s selflessness and unshakeable determination. We look forward to hearing about all the lives she will undoubtedly impact for the better and hope her dreams become reality.

Mesothelioma and The Importance of Diversity in Clinical Trials

 

Mesothelioma and The Importance of Diversity in Clinical Trials

Recently, a group of scientists took a look at the state of diversity in clinical trials, and according to the results they published in PLOS One, the news was not good. The study, headed by Sam Oh and discussed in a paper titled “Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled,” found that the vast majority of medical research uses a homogenous population of white males to research various drugs, diseases, and other medical issues.

These results are certainly troubling for people who suffer from various medical conditions at large. However, they are even more troubling for victims of relatively rare diseases such as mesothelioma, given that the potential pool of participants in research is so small to begin with.

History of Diversity in Medical Research

We have long known that a person’s genetic makeup determines what diseases and medical conditions they may be susceptible to. It also determines the types of treatments that may be effective for an individual.

In recognition of this fact, the National Institutes of Health (NIH) Revitalization Act was passed in 1993 and signed into law by then-President Clinton. Among other things, the act required studies funded with federal dollars to include women and minorities, and to provide a description in papers published as a result of those studies.

Since the implementation of that act, the NIH has made specific efforts to improve gender equity in medical studies. However, while there has been some advancement for women, there is still a long way to go with respect to studying medical problems according to race and ethnicity.

Dr. Oh and his team have shown that since the NIH Revitalization Act became law, studies have drastically under-studied minorities. According to the paper, over the last 23 years “less than 2% of more than 10,000 cancer clinical trials funded by the National Cancer Institute included enough minority participants to meet the NIH’s own criteria and goals” and less than 5% is true for studies of respiratory issues.

Given that minorities make up nearly 40% of the population, this lack of diversity in medical studies is implicated not just in medical problems, but also in economic disparity. During the period between 2003 – 2006, an estimated $1.2 trillion in medical costs could have been saved simply by having more diversity in medical studies.

Why We Need Diversity in Mesothelioma Studies

Mesothelioma is sometimes called an “old man’s disease,” but as we know all too well, anyone can be subjected to asbestos exposure– whether it’s in your home, at your workplace, or simply happened to be on the jacket your dad wore every day, as was the case with Heather Von St. James.

This deadly cancer does not discriminate, nor should we limit our attempts to find a cure for mesothelioma to a single subset of its victims.

Furthermore, as mesothelioma (and cancer in general) continues to become a greater problem in developing countries, there is an even greater need to take a multiethnic approach to combatting this worldwide, indiscriminate disease. Given the diversity of the population and the amount of money spent already on medical research, researchers in the U.S. and other economically stable countries stand uniquely poised to make a lasting impact on how mesothelioma, other cancers, and deadly diseases in general are studied.

How to Make Studies More Inclusive

The good news is that we don’t need to fight any legislative battles or pass any new laws to make this happen. Those fights were fought – and won – more than two decades ago.

All we need now is to:

• Increase awareness of the problem and the benefits of changing current practice with respect to medical research;
• Convince the people who organize and run such studies that inclusivity helps everyone.

Anyone can help, whether you’re a participant in a clinical trial, a friend or family member, a doctor or researcher. Even just talking to people about the problem and making it part of the social conversation will help change attitudes and, hopefully, practices.

Hollywood and Mesothelioma The History of Asbestos Use

 

Hollywood and Mesothelioma: The History of Asbestos Use  

Commercial use of asbestos began in 1879, and in 1935, the first cases of asbestosis and asbestos-caused lung cancer were diagnosed in the United States. In the early 1970s, the government placed a moratorium on the production of most asbestos products, but the use of asbestos in manufacturing continued well into the 1980s, and in some cases, asbestos has been found in products today.

Attributed mostly as a disease that affects workers exposed to asbestos because of specific occupations, including most notably veterans and construction workers, mesothelioma and other asbestos-related diseases don’t discriminate against anyone who may have been exposed to the deadly fiber in more unknown use cases. For example, film industry professionals are also at risk and have fallen victim to diseases like mesothelioma due to a hidden history of asbestos exposure in Hollywood.

Fake Snow

Until the late 1920s, filmmakers would use cotton batting to create snow effects. In 1928, before asbestos was widely known as a dangerous substance, a firefighter pointed out that cotton was a fire hazard on sets and suggested the use of asbestos as a “safe” alternative. Unfortunately, the idea caught on in Hollywood, and from the 1930s to the 1950s, asbestos snow was manufactured and marketed to the industry with names like “Pure White” and “Snow Drift.”

Perhaps the most famous film application of this is the Wizard of Oz (1939), where asbestos snow was blown on the cast in the poppy field scene. In 1942, asbestos snow fell all around the cast and crew of Holiday Inn.

On the Set

While a chemical snow called foamite was invented for It’s a Wonderful Life (1946), asbestos was used to dress other parts of the set, according to Life Magazine writer Helen Robinson.

In the 1964 Bond film Goldfinger (and likely other Bond films), asbestos was used in special effect boards and piping that lined the sets, which carpenters would cut up.

The CBS Network facilities also contained asbestos, and actor Ed Lauter, who worked on-site at CBS for more than 20 years, died from mesothelioma in 2013.

Fireproof

Because of its fireproof quality, asbestos was used for a variety of stunt-related manufacturing and for safety at theaters. As a safety precaution in large proscenium theaters, fire curtains made with asbestos were used from the 1960s through the 1980s. Stunt men like Steve McQueen, who was a victim of mesothelioma himself, were exposed to asbestos when wearing flame-retardant suits in the 1960s.

What About Now?

Many filmmakers leverage old, existing buildings and other structures for locations that likely contain asbestos insulation, which could pose a threat to the cast and crew if disturbed in any way.

During World War II, the demand for asbestos use for the military increased, and its overt use in the film industry subsequently decreased. As the deadly nature of asbestos was further studied and confirmed, it was used less and less. However, the substance has yet to be banned in the United States.

Assessing New Targeting Therapies as Treatment for Mesothelioma

 

Assessing New Targeting Therapies as Treatment for Mesothelioma 

In the search for a cure and improved treatment options for mesothelioma, medical researchers continue to study what’s known as epidermal growth factor receptor (EGFR) inhibitors, which kill cancers with mutated EGFR. Mutant EGFR helps cancer cells— which are found in malignant mesothelioma— grow.

Recently, there have been new developments on targeting cancers driven by EGFR mutations.

EGFR Inhibitors And Lung Cancer

The standard of care for patients with non-small cell lung cancer (NSCLC) with an EGFR mutation is treatment with one or more EGFR inhibitors. EGFR mutations have been found in 1 in 10 patients of non-Asian descent diagnosed with NSCLC, and in about half of Asian patients.

At the 4th AACR International Conference on Frontiers of Basic Cancer Research, Dr. Pasi Janne from the Dana-Farber Cancer Institute stated, “Treatment with an EGFR TKI [inhibitor] leads to a response rate of about 60%.”

Dr. Janne provided a stimulating talk on mechanisms of resistance to EGFR inhibitors in lung cancer, pointing out that “acquired drug resistance inevitably develops in most if not all EGFR mutant lung cancer patients [who are] treated with EGFR inhibitors.” However, a new combination that inhibits both EGFR and a related protein known as MEK, appear to make it harder for the tumor to obtain resistance.

The development of two new EGFR inhibitors, known as AZD9291 and rociletinib, are progressing thanks to the FDA, who has designated them as breakthroughs. These inhibitors do not block the unmutated EGFR expressed in normal cells, and clinicians anticipate that they will have minimal side effects, though further clinical testing is needed.

Mesothelioma and Mutated EGFR

While a majority of mesothelioma cases do not seem to have the same EGFR mutations as other cancers, a 2010 study suggests that some mesothelioma tumors have unique, or novel, mutations in the EGFR gene. In other words, these mutations have not been detected in any cancer previously.

In the study, 25 mesothelioma patients were treated with surgery, but not the EGFR inhibitors. Researchers analyzed the survival rate of the mesothelioma patients with the novel EGFR mutations and without them. The mesothelioma patients without the novel EGFR mutations (13 of 18) had a median survival of 14 months. Surprisingly, the mesotheliomas of only 2 of the 7 patients (29%) with the novel mutations in EGFR developed progressive disease within 24 months, and these patients had longer survival times.

A clinical trial sponsored by the Dana-Farber Cancer Institute tested two EGFR inhibitors in 37 mesothelioma patients in order to find out whether treatment with one or both of these EGFR inhibitors delays progression of mesothelioma tumors. Results have yet to be posted.

Read more: http://www.mesothelioma.com/blog/authors/staff/assessing-new-targeting-therapies-as-treatment-for-mesothelioma.htm#ixzz412WZss5L

What to Eat During Cancer Treatment

What to Eat During Cancer Treatment

Nutrition is an integral part of any cancer treatment plan. For mesothelioma and other cancer patients, eating foods that support energy levels, immune function, and overall health is crucial to getting through treatment as successfully as possible and for improving well-being. Figuring out which foods are right and which foods are wrong, however, can be a confusing and overwhelming process given the amount of conflicting information that circulates about diet and nutrition.

According to the Dana-Farber Cancer Institute, it’s important to eat a well-balanced diet and follow Harvard School of Public Health’s proposed healthy eating plate. In order to help boost energy during cancer treatment, prevent weight gain and manage treatment-induced symptoms, their general recommendations are as follows:

• Include a variety of vegetables and fruits, both of which should make up half your plate.
• Eat a wide array of whole grains, such as whole-wheat breads and pastas, brown rice, etc. These should constitute for a quarter of your plate.
• Avoid processed meats like bacon and cold cuts, and limit red meat and cheese as a source of protein. Instead, choose fish, poultry, beans, and nuts for the other quarter of your plate.
• Limit butter and instead opt for healthier fat sources, such as olive and canola oil.

Remember to drink plenty of fluids, such as water, tea, or coffee, and limit milk to 1-2 servings per day. Enjoy no more than 1 small glass of juice a day and avoid sugary beverages.

Chemotherapy

Common symptoms of chemotherapy include weight and muscle loss. To help prevent these symptoms, Dana-Farber’s senior clinical nutritionist Stacy Kennedy recommends eating smaller meals that are nutrient and calorie-dense more frequently as opposed to three large meals. Prioritizing protein by including foods like hummus, nuts, lean meats, eggs, beans, and fish should also help support immune function and energy.

Radiation

Some side effects of radiation include lack of appetite and nausea. If side effects are experienced, supplementation to ensure adequate nutrition is most important. Because of this, including fortified foods may be a good and easy way to add to the nutrient bank. Patients may also benefit from including nutrient-rich smoothies and protein drinks, and choosing calorie-dense options over low-calories ones, like milk over water, and adding gravies and sour cream to foods.

 

What to Eat During Cancer Treatment

Surgery

The main focus of a diet following cancer surgery is healing and replenishing calories and nutrients that will allow the body to recover. Eating the right foods can help reduce the risk of infection, speed healing and increase strength and energy.

To reduce the risk of postoperative constipation, include fiber-rich foods like fruits and vegetables, whole grains, and oatmeal. Prioritize healthy proteins like lean meats to help your body heal and regenerate tissue. To lessen fatigue, eat enough of nutrient-dense carbohydrates and healthy fats. Above all, focus on fruits and vegetables to ensure adequate intake of vitamins and minerals.

Stem Cell Transplant

For stem cell transplant patients, it’s crucial to follow a set of special dietary guidelines for 100 days after in order to prevent infection. This diet is often referred to as a “liberalized low bacteria diet,” and aims to help patients avoid certain foods or preparation techniques that increase the risk of infection. Patients should avoid expired and raw foods (including raw fruits and vegetables), unpasteurized milks, juices, and ciders, raw honey, dried spices, and bakery foods. They should also wash hands and surfaces properly, and cook high risk foods like eggs and meat thoroughly.

Of course, before making any dietary changes, it is essential you speak to your doctor. Consult a registered dietitian (RD) so they can advise you on a diet plan that meets your individual needs.

Taking Action Against Asbestos ADAO's 9th Asbestos Congressional Staff Briefing

 

Taking Action Against Asbestos ADAO's 9th Asbestos Congressional Staff Briefing 

Asbestos claims the lives of approximately 15,000 people every year in the United States. And yet, this lethal substance is still legal, permitted to keep threatening consumer safety and the health of the general public. Soon, legislators will cast votes that will have an immense impact on asbestos victims’ civil rights, consumer safety, and public health.

If there was ever a time to make sure our voices are heard, it’s now. Through our shared stories, we must put a face to what is both a public and deeply personal man-made asbestos disaster.

Join us and be heard, please submit your “Share Your Story.”

The Event

That’s why on Tuesday, February 23, 2016, the Asbestos Disease Awareness Organization (ADAO) is hosting the 9th Congressional Staff Briefing, “Asbestos: Impact on Consumer Safety, Public Health, and Asbestos Victims’ Civil Rights.” ADAO will be presenting each staffer with stories from their states.

Through our stories, we will discuss how asbestos has impacted and continues to impact victims from mesothelioma and other asbestos-caused diseases. Specifically, the briefing will focus on Toxic Substances Control Act (TSCA) reform that ensures the EPA can take expedited action on asbestos, Reducing Exposure to Asbestos Database (READ) Act, and the Furthering Asbestos Claims Transparency (FACT) Act.

The Speakers

At the briefing, in addition to myself, there will be a number of speakers including mesothelioma patients Heather Von St. James, Julie Gundlach, and Annamarie Kearns, along with a mesothelioma widow, Marilyn Amento. Our 9th briefing is another opportunity to help lawmakers understand asbestos and the tragic reality those who encounter it often face.

The Details

When: Tuesday, February 23, 2016
Where: SD-G1, Washington, D.C.
Time: 12:00pm - 1:00pm

Lunch will be provided. Please note, this briefing is for credentialed staffers only.

Take Action

Please call your two US senators and urge them to send Judiciary, Health, and Environmental staffers to ADAO’s one-hour briefing on February 23rd. It’s so easy and very gratifying. Details and the phone script can be found online.

Together, with every story a flame, we will build a fire that cannot be extinguished.

Read more: http://www.mesothelioma.com/blog/authors/linda/taking-action-against-asbestos-adaos-9th-asbestos-congressional-staff-briefing.htm#ixzz410aU9qB7

Asbestos Hurts Developing Nations The Most

 

Asbestos Hurts Developing Nations The Most

More than 50 nations have banned asbestos over the past three decades, but that fact provides little comfort to Sharad Vittnal Sawant of Mumbai, India. He works in a factory that uses chrysotile asbestos and lives in a nation that is one of the world’s largest importers and consumers of asbestos. Hundreds of his fellow workers at the factory have been diagnosed with asbestos-related diseases – and both Sawant and his wife have asbestosis.

Last May, Sawant travelled to Geneva, Switzerland where he made a moving appeal at the Rotterdam Convention, pleading with delegates to place chrysotile on its list of dangerous substances. “I have worked for 40 years at the factory Hindustan Ferodo (now Hindustan Composites), which uses chrysotile asbestos,” Sawant began. “I am suffering from asbestosis and my wife as well. About 400 of my colleagues have been diagnosed as well. I came here to request you to put chrysotile asbestos on the PIC (Prior Informed Consent) List of the Rotterdam Convention,” Sawant said.

His remarks were met with cheers from many delegates and jeers from at least one industry lobbyist, according to published reports. However, his pleas went unheeded: The convention rejected a move to place chrysotile asbestos on its PIC list. The move wouldn’t have banned exports and imports of the substance, but it would have required that governments in all nations be provided full information about the dangers to human health and the environment before importation.

Why Banning Asbestos Is So Hard

The convention is an international treaty intended to regulate global trade in dangerous chemicals and protect the world’s most vulnerable nations. Under its rules, placing a chemical on the PIC list requires unanimous consent. The move to place chrysotile on the PIC list failed after Russia, the world’s biggest asbestos producer and three other nations objected. It was the fifth time the convention had rejected a move to place chrysotile asbestos on the list of dangerous substances.

Like much of the developing world, Sharad Vittnal Sawant learned a hard truth from the vote at the convention. Despite a definitive finding by the World Health Organization and numerous scientists that all forms of asbestos, including chrysotile, are human carcinogens, and despite calls from scientists for a worldwide ban, even modest efforts to restrict and regulate the use of asbestos are difficult to adopt in the face of opposition from the asbestos lobby. As a result, there is a continuing and thriving worldwide trade in asbestos, one that has particular consequences for people in developing nations where the use is most prevalent.

“I have been researching and analysing developments in the global asbestos trade for over 25 years,” Laurie Kazan-Allen, Coordinator of the International Ban Asbestos Secretariat (IBAS), told Mesothelioma Cancer Alliance. “When I began in 1990, global asbestos consumption was nearly 4 million (metric) tons a year. It is now around 2 million. While some progress is better than none, it still means that millions of people around the world are experiencing hazardous exposures on a daily basis.”

Indeed, although asbestos is now banned in 52 nations, dozens of countries still use, import, and export asbestos and asbestos-containing products. Those countries are primarily developing nations in Asia and Eastern Europe that are desperate for industrial growth and often turn a blind eye to the health and environmental consequences of asbestos exposure.

The worldwide trade has been enabled and led by a handful of powerful interests, for a long time the Canadian asbestos lobby and now the Russian asbestos producers.

“Over recent decades, developed countries have restricted or prohibited the use of asbestos,” Kazan-Allen explained. “To compensate for this loss in trade, global asbestos profiteers have targeted markets in developing countries, many of which are in Asia. In countries such as India, Vietnam and Thailand there are few health and safety regulations and the ones which exist are not enforced.”

Asbestos Import/Export Still High

Four countries produce nearly all of the asbestos consumed worldwide today. In 2014, the most recent year for which numbers are available, Russia was by far the world’s largest producing nation, with 1.1 million metric tons, followed by China with 400,000 metric tons, Brazil with 284,000 metric tons and Kazakhstan with 240,000 metric tons. Russia was also the largest exporter of asbestos, followed by Kazakhstan, Brazil and China.

And there’s no indication that worldwide asbestos production is likely to slow down in the near future, at least in Russia. According to one report, Russia has mines rich enough in asbestos deposits to last for more than 100 years at current levels of production.

India, where Sharad Vittnal Sawant lives and works, was the world’s largest importer of asbestos in 2014, with 379,043 metric tons imported. Six other nations imported at least 10,000 metric tons – China, Indonesia, Sri Lanka, Thailand, Ukraine and Mexico. The United States, where asbestos is still legal, imported 423 metric tons in 2014.

According to estimates of apparent asbestos consumption calculated by the IBAS, the 10 top asbestos-consuming nations in 2014 were Russia, China, India, Brazil, Kazakhstan, Indonesia, Sri Lanka, Thailand, Ukraine, and Mexico. The estimates are based on data from U.S. Geological Survey (USGS) and United Nations statistical data.

Asbestos Deaths on the Rise

Occupational exposure to asbestos was responsible for 194,000 deaths in 2013, according to statistics from The Global Burden of Disease Injuries and Risk Factor Study of 2013, published in the Lancet medical journal. Those numbers represent more than an 80 percent increase from the 107,000 deaths figure from the World Health Organization.

A large percentage of those deaths have occurred in Europe and the United States and are a consequence of heavy asbestos use during earlier decades. For countries that have stopped using asbestos, deaths from asbestos-related disease have not yet peaked, but are expected to eventually decline. By contrast, developing countries in Asia that are the primary consumers of asbestos today are expected to have a substantial increase in asbestos-related diseases decades from now, because of the long latency period, according to the World Health Organization and other scientific groups.

“The ARD (asbestos related-diseases) epidemic will likely not peak for at least a decade in most industrialized countries and for several decades in industrializing countries,” the Collegium Ramazzini warned last June. The Collegium is an international academy of 180 scientists from 35 countries that examines critical issues in occupational and environmental medicine. It has called for a ban on all mining, manufacture and use of asbestos.

“Asia is a ticking time bomb,” said Linda Reinstein, president of the Asbestos Disease Awareness Organization (ADAO), which works with public health organizations and scientists around the world in an effort to eliminate asbestos-related diseases. “Eight countries – Brazil, China, India, Indonesia, Russia, Sri Lanka, Thailand, and Vietnam – are the largest asbestos producers and users, and account for nearly 50 percent of the global population,” she continued. “The catastrophic burden of asbestos-caused disease has yet to be felt.”

Kazan-Allen has a similar view. “When you combine the lack of workplace or environmental asbestos protections with the popularity of smoking and the younger ages at which people are exposed in asbestos in these countries, there can be no doubt that the asbestos epidemics now raging through Europe and North America will reach Asia in the very near future,” Kazan-Allen warned. She added that tobacco and asbestos interact synergistically to produce heightened risks for those exposed to both asbestos and tobacco.

Local Asbestos Ban Efforts Continue

To be sure, there are various local and global efforts to ban or reduce the production and use of asbestos in parts of the world. “South America is likely to change drastically in the next years,” Marc Hindry of the French National Association of Asbestos Victims (ANDEVA) told Mesothelioma Cancer Alliance.

Peru and Colombia “are moving toward a ban,” and Brazil, one of the four asbestos-producing nations and a big asbestos user, “is slowly closing down on asbestos activities,” Hindry said. “Brazil took a very responsible position at the Rotterdam Convention, supporting inclusion of chrysotile (asbestos) on the PIC list and stating that they are currently discussing use of asbestos.”

Moreover, “Africa could turn to a general ban on asbestos,” Hindry continued, adding that all of the African nations, with the exception of Zimbabwe, have supported inclusion of chrysotile asbestos on the PIC list at the last three Rotterdam Conventions.

Worldwide Asbestos Ban Still Years Away

Despite those advancements, neither scientists nor advocates for banning asbestos expect to see a worldwide ban anytime soon, and they warn that the consequences will last for decades.

“The top five barriers to elimination of asbestos include propaganda and misinformation, lack of education and training, disease latency period, weak regulatory enforcement and economic pressure,” said the ADAO’s Reinstein.

Looking ahead, there will be another move to restrict and regulate use of chrysotile asbestos at the Rotterdam Convention in 2017, but supporters aren’t optimistic.

“There will definitely be another effort to put asbestos on the PIC list,” said Hindry. “The prospect of success is essentially zero as long as Russia will continue to oppose it.”

“The problems is the absurd interpretation in the context of public health of the tradition at the U.N. of negotiations by consensus,” he added. “The consensus rule of course makes sense in peace discussions, (but) it become absurd when any country, wishing to protect some industry interests, can simply declare that ‘the earth is flat’ and therefore there is no certainty about the toxicity of chrysotile asbestos.”