Cancer News Blog

Sometimes-if you hang around long enough-you get the opportunity to see some good things happen.  The Compassionate Allowances Program from the Social Security Administration is one of those “good things,” and last week I had the opportunity to participate in an event in Washington, DC marking the completion of adding the first 100 diseases to this program.

The basics of the program are fairly straight forward: patients who are diagnosed with one of 100 medical conditions-of which 31 are related to cancer-have their Social Security disability applications accelerated through the review process, meaning the delay in getting them their disability payments is considerably minimized.

That may not sound like much to you, but to people suddenly diagnosed with a life-threatening, life-ending or life-changing illness, it means they don’t have to wait around for months and months and months while their disability application goes through the routine bureaucratic channels until they get their first disability checks, sometimes after they have passed on from this earth.

When you think about the bureaucracy of government, you begin to appreciate what a major accomplishment this represents. It was no easy task, so “hats off” to Social Security Commissioner Michael Astrue and his capable staff for making this happen.

Cancer is a devastating disease. Every year, almost 1.6 million people are diagnosed with invasive cancer in the United States, and almost 600,000 people die as a result of cancer. Despite the grim statistics, we have made considerable progress through our knowledge of what we can do to prevent cancer, find certain cancers early when they are more readily treated, and treat many cancers more effectively.  The result is that today we have almost 12 million people alive with cancer, a remarkable achievement that has occurred over the past several decades.

But there are still too many for whom we cannot offer lifesaving treatment or where the treatment-while potentially able to save lives–is particularly intense.  For too many among us when diagnosed with cancer, survival may be measured in months instead of years or the treatment is known to be so debilitating that any semblance of a normal lifestyle-let alone the ability to work and earn a living-is simply not possible.

With the development of the Compassionate Allowances program, we can at least offer many of those cancer patients a hope that there is some help available that may make their cancer journey just a bit easier and less difficult.  As a nation, we can offer those who find themselves faced with a circumstance that no one chooses to face a hope that we recognize what is happening to them, and that we can take a step to lessen their burden.

When I first testified before the Commissioner in 2008 in support of developing the Compassionate Allowances Program, I commented about how difficult the situation was for my patients to get Social Security disability when diagnosed with cancer, and how especially forbidding the application and review process was for patients who had obvious terminal conditions. That was back when I started my oncology practice in the mid-1970′s. I implored the Commissioner to move forward with his commitment to simplify the process for these patients, that the time had certainly come for us to do right by those who faced not only the distress of a life-threatening or life-ending illness but also the distress of being financially ruined by the disease.

The Compassionate Allowances Program cannot solve all of the financial issues facing cancer patients in these circumstances, but it can go a long way towards making their lives a bit less difficult. In the same way that we have addressed access to affordable health care, the Compassionate Allowances Program helps address the serious financial problems faced by cancer patients. It certainly will ease the way for many who find themselves in a circumstance they didn’t-and couldn’t-plan for, at a time when they will know that someone cared to do the right thing.

No one would voluntarily get an illness in order to participate in this program. For cancer patients, the program does not cover all instances where a cancer is diagnosed and treated. It is limited to those diagnoses where it is reasonably obvious to all that the condition is either going to have a limited prognosis, or require very intensive treatment, or both, such as pancreatic cancer.

The program is not limited to patients with cancer. Many conditions including neurologic and cardiac diseases among others are covered.

Harry Johns, who is the chief executive officer of the Alzheimer’s Association (and a former executive here at the American Cancer Society) eloquently told the story at the event of how patients with Alzheimer’s Disease regularly contacted the Association soon after they were diagnosed, complaining about the length of time it took to get disability benefits. Now, he recounted, they call in amazement and gratitude that the process has been so efficient and effective at getting them their benefits so quickly.

Those are remarkable stories, all the remarkable because these are folks who are truly in need at a desperate time in their lives. The success (and the commitment) of the staff at Social Security are to be congratulated on their efforts to make a difference where it counts the most.

For an estimated 150,000 people in the United States this year alone who will benefit from this program, Compassionate Allowances means compassion in the truest sense of the word.

To the Commissioner and his staff, our congratulations and appreciation for addressing a serious problem that had been so obvious to so many for so long. We are grateful for your success

Cancer care is a multi-faceted task, and a reputable treatment center is critical in obtaining the best service for your medical needs. Listed here are 5 top cancer treatment centers in America, in a traditional hospital setting. Not all centers are alike; some will have a higher level of expertise in certain cancer types than others; therefore, it is suggested to do as much research as you can to find the center that is highly-ranked in your specialty.

MD Anderson Cancer Center

First on the list is the University of Texas MD Anderson Cancer Center , with a focus on the excellence of their people, research-driven patient care and science. With a mission to eliminate cancer in Texas, the nation, and the world, they are committed to their core values which include caring, integrity and knowledge. MD Anderson’s main campus can be found at the Texas Medical Center in Houston. They also retain a number of regional care centers in other states. MD Anderson’s noteworthy reputation includes the fact that for seven of the past nine years (including 2010), they ranked #1 in cancer care in the “America’s Best Hospitals” survey published by U.S. News and World Report.

Memorial Sloan-Kettering

Our next two listings will be found on the east coast, starting with Memorial Sloan-Kettering in New York. It is the oldest and largest cancer center founded in 1884. Adjacent to the hospital is the Sloan-Kettering Institute, a premier biomedical research institution. Sloan-Kettering is committed to development of community-based outpatient cancer treatment facilities which bring expert care closer to patients in the area. Their main campus is located on the upper east side of Manhattan, however their outpatient treatment centers can be found in several locations including Long Island, Westchester County and New Jersey.

Additionally, in 2004, Memorial Sloan-Kettering Cancer Center set up a graduate school offering a PhD program in cancer biology to support ongoing cancer research and support for patients.

Sidney Kimmel Comprehensive Cancer Center (Johns Hopkins Hospital)

Our next listing, the Sidney Kimmel Comprehensive Cancer Center, is also referred to as John Hopkins Hospital and is located in Baltimore, Maryland. Hopkins utilizes some of the most innovative and advanced therapies in cancer research. At John Hopkins, the research scientists and clinicians work closely together to incorporate their findings into the clinical setting so the patients can benefit from the newest options available.

Hopkins also provides a variety of specialty programs for both adults and children coping with cancer as well as a comprehensive genetics service to help those at high risk for breast, ovarian, colon and other types of cancer. In addition, they provide a Cancer Counseling Center for patients and their families traveling from out of state.

University of Washington Medical Center (Seattle)

On the west coast we find the University of Washington Medical Center in Seattle, Washington. Their clinics cover each type of cancer and focus on new approaches to cancer treatment and care through clinical trials and therapies. Patient care is handled using an alliance of three medical facilities, the Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Children’s, which combine to form Seattle Cancer Care Alliance. Their goal is to provide access to leading-edge research trials for many types of cancer using a team approach to treatment.

Mayo Clinic Cancer Center

Our final listing, found in Rochester, Minnesota, is the Mayo Clinic Cancer Center, which is considered one of the best in patient satisfaction. Mayo utilizes its three campuses in Arizona, Florida and Rochester to provide services to a diverse population. The center’s primary goal is to lessen the burden of cancer on society. Utilizing their philosophy to develop medicine as a cooperative effort between the clinician, the specialist and laboratory workers, Mayo readily translates information gained from their research programs into patient care. In other words, they strive to use new discoveries and information as quickly as possible to help as many cancer patients as possible.

The US News & World Report’s annual “Best Hospitals” survey for 2011 has just been released and the top ranked hospitals for cancer care are also several  of the most renowned for their mesothelioma treatment centers.   University of Texas M.D. Anderson Cancer Center in Houston, TX took the #1 spot with Memorial Sloan-Kettering Cancer Center (MSKCC) in New York, NY being selected as #2.  Brigham and Women’s Cancer Center in Boston was ranked 5^th.

M.D.  Anderson Cancer Center has a vision of being the “premier cancer center in the world,” and is continuously introducing new research and initiatives to improve the lives of cancer patients.  Within their cancer center they have over 30 specialists on staff that support their multi-disciplinary approach to treating mesothelioma patients.  

According to MD Anderson, this is the fifth year in a row that the US News & World survey ranked MD Anderson the nation’s best hospital for cancer care. It is the eighth time in the last 10 years that MD Anderson has been honored with the top ranking.

MSKCC is the worlds oldest and largest private cancer center, and has a team of specialists including surgical oncologists, medical oncologists, radiation oncologists, pathologists, and nurses who deal exclusively with mesothelioma and other thoracic cancers.  They often conduct clinical trials and studies for mesothelioma as they continue to make strides in the treatment of the deadly disease.   MSKCC scored high in patient safety, demonstrating commitment to reducing accidents and medical mistakes.

Dr. David Sugarbaker, renowned thoracic surgeon of Brigham and Women’s Hospital in Boston, MA,  is one of the leading authorities on treating mesothelioma and founded the International Mesothelioma Program at Brigham to focus on developing the most effective, cutting-edge treatment strategies that can significantly extend mesothelioma patients’ lives.  Brigham was identified as having especially strong scores in 10 specialties.

U.S. News surveyed nearly 10,000 specialists and reviewed data for close to 5,000 hospitals to rank the best in 16 adult specialties, from cancer to urology. Death rates, patient safety, and hospital reputation were a few of the factors considered.  

Mesothelioma is a serious and rare cancer that occurs in individuals that have been exposed to airborne asbestos fibers.   Due to its relative rarity among the general population, it is recommended that mesothelioma be treated at a facility with a team of doctors and surgeons that specialize in the treatment of mesothelioma.  Specialists are aware of the latest research and they are able to develop a more informed treatment plan than would a physician who does not specialize in the disease.

The hospitals were among 140 facilities—fewer than 3 percent of the 4,825 analyzed for the latest Best Hospitals rankings—to be ranked in even one of the 16 specialties.

The Know Cancer website is a great place to join a community in the fight against cancer. It is a support center,  a place to ask questions and a place to get general information about cancer. When you start browsing through the site, you will discover more and more resources! Particularly, the cancer resource section is huge and contains most anything you can imagine for dealing with cancer. Below is an overview of the Know Cancer Resource Directory which will help you navigate the topics and get the support you need.

Navigating through Know Cancer

The site contains tabs at the top of the page; they are “Community”, “Education”, and “Resources.” Under the “Resources” tab, you select from a listing of categories after which you can drill down further and select a state, then city, from the right-hand side of the page to find those resources close to you. It’s a wonderful option to find information about what’s available in your own neighborhood when sorting through cancer related businesses.

Cancer related service providers may also use this site to include their listings to enhance the value provided to the cancer community. We all work together to support each other and can do so directly using the resource section.

Categories in the Know Cancer Resource Directory

Oncologists: if you do not have an oncologist, or need a second opinion, select this topic to find an oncologist in your area.

Cancer Research Centers: you can learn more about latest cancer research findings towards a cure by checking out cancer research centers. Using this reference, you will find the name, address, phone number and website of the facility.

Cancer Treatment Centers: you can search for your cancer care team by finding a treatment center you like, and then work with the oncologists there. The centers are sorted by state (which you select on the right-hand tabs) and list the center name, address, phone number and website.

Medical Imaging and Screening: you may need radiology services and can search for the appropriate site for your needs by selecting this resource.

Wellness and Nutrition: professional nutritionists and dieticians are listed here; all are available to help you find the information you need for better health.

Holistic Practitioners: you may prefer complementary and alternative treatments; you will find them listed here. It is helpful to drill down by state using the tab listing on the right-hand side of the screen.

Cancer Camps and Retreats: adventures exist where you can connect with others and be rejuvenated by a retreat specifically for you.

Emotional Support: cancer is a multi-faceted disease affecting all aspects of our lives; emotional support is a helpful benefit in keeping things in perspective. You will find services for emotional help here.

Psychiatrists: you can locate a psychiatrist in your area using this resource listing.

Psychologists: you can locate a psychologist in your area using this resource listing.

Legal Assistance: select a resource to help you find the answers you needing in questions that arise during your fight with cancer.

Financial Assistance: each cancer situation has its unique set of questions that can be addressed to an appropriate resource, listed here.

Health Insurance: the world of insurance is confusing at times; you can find information to help you obtain the best medical care and assistance here.

Massage Therapists: cancer care can be eased with the help of therapies including massage therapy. Find help to promote relaxation and reduce stress.

Physical Therapists: home healthcare aides are listed to find the person you need to help on your path toward recovery.

Home Health Care: there are a variety of services available in the home health care world, from assistance with household tasks to medical services at home.

Prosthetics, Wigs & Accessories: this listing includes products you might find help to regain your sense of self.

Hospice: there are a number of programs to help copy with the emotional and physical components of cancer, dying and grief. You can search by state to find the program specifically to meet your needs.

New York mesothelioma attorney Joseph W. Belluck said the predicted surge in mesothelioma deaths in Asia underscores the need for a worldwide ban on asbestos.

Mesothelioma, a cancer of the lining of the lungs, is closely linked to breathing asbestos, Belluck said.

“It’s no coincidence that an increase in mesothelioma in Asia is anticipated, following the greater imports of asbestos in Asian countries in recent decades,” said Belluck, a partner in Belluck & Fox, LLP, a New York law firm that represents mesothelioma victims. “We know from experience that mesothelioma deaths will soon follow the increase in asbestos use.  In the U.S., asbestos use peaked in the mid-20th century, and we are still dealing with new cases of mesothelioma diagnosed every week as a consequence.”

According to the new study in Respirology, the journal of the Asian Pacific Society of Respirology, the increase in asbestos use in Asian countries since 1970 is likely to trigger a surge in asbestos-related diseases, including mesothelioma and lung cancer, in the next 20 years.

Asia’s share of worldwide asbestos use has steadily increased from 14 percent in the decades before the 1970s to 64 percent from 2001 to 2007, the study said. Asbestos is widely used in building materials, roofing, cement and power plants in Asia. Yet many Asian countries that import asbestos have weak or non-existent workplace safety laws to protect workers from inhaling the toxic asbestos dust.

The portion of mesothelioma deaths recorded in Asian countries is far less than the percentage of asbestos used in Asia, suggesting mesothelioma deaths will rise significantly in the next 20 years. Workers exposed to asbestos typically take 20 to 50 years to show symptoms of malignant mesothelioma after inhaling asbestos fibers.

“Mesothelioma is a tragedy in slow motion, but the consequences are very real to the affected families,” Belluck said. “We believe a worldwide ban on asbestos, as called for by the World Health Organization, is the only sure way to stop the suffering and deaths caused by mesothelioma and asbestos-related disease.”

I remember the moments very well when I came face to face with the reality that what we are served in restaurants packs a lot more punch and paunch than many of us realize. And a couple of research papers today reminded me why this is so important.

There I was a couple of years ago, standing at a well-known fast food restaurant in LaGuardia airport after a long day of meetings, trying to find something reasonable to eat before getting on the flight home. And displayed on the sign in front of me were the calorie counts of the various choices that were available. Although several were appetizing, none (if I recall correctly, even the salad) was reasonable in terms of the calorie count. I was glad to see the calories, but dismayed at the information.

But my “light bulb moment” came when I was having dinner with some of my family at a well-known chain restaurant (which is well known for its eponymous dessert) outside of Washington DC reading the menu and finding few choices under 1000 calories-and desserts that in some instances topped a couple of thousand calories.  I was desperate and distraught, but had to cave and get something-no matter what the calorie cost was going to be.

Many of us are about to have similar experiences, as restaurant chains nationwide are going to start posting the calorie count of their menu items.  It happens to be a proven way to make people aware of what they are eating, and hopefully will begin to address our nationwide obesity epidemic (more about that later). I suspect it is going to be a rude awakening for many of us when we come face to face with the calorie cost of that burger and fries.

An article in today’s issue of the Journal of the American Medical Association drives home the point that those stated calorie counts are not always accurate. So, what you think you are getting for breakfast, lunch or dinner may in fact have more (and in some cases, fewer) calories than what is posted on the menu. This is bound to make our journey to health all the more difficult.

The researchers took a sample of various meals from a number of nationwide chains in different parts of the country. They then analyzed those food portions to see if the calories listed on the menu or available from other sources such as restaurant websites in fact accurately portrayed the number of calories contained in the actual portion served in the restaurant.

Overall, when looking at total averages of everything, the stated calories matched up pretty well to the actual calories. However, 19% of the individually tested foods had at least 100 more calories than stated. The researchers even found one side dish that had 1000 calories more than what the dish was supposed to have according to the restaurant’s information. 40% of the tested foods had at least 10 calories more per portion than stated. On the “good” side, 52% had at least 10 calories lower than the claimed amount.

One interesting finding in the “sit down” restaurant category was the observation that the lower the stated calorie content the greater the chances that the actual calorie count was higher. This was particularly true for portions that were supposed to be 625 calories and lower. That happens to be the place where many diet-conscious patrons go on the menu to get something that won’t help pack on the pounds, so the discrepancy there is especially problematic.

For those foods on the top 10 list of this study (the 10% of the tested foods that had the highest difference between tested and stated calories), the actual difference was about 289 calories per portion. On second testing to confirm that finding, the actual number was 258 calories.

Why all the fuss over a couple of calories here and a couple of calories there? What difference does it really make?

Consider some of these facts, as highlighted in the article and an editorial that appeared in the same journal:

• A pound of fat contains about 3500 calories. If you reduce your intake 500 calories a day, you will lose a pound a week. On the other hand, as noted in the original article, if you eat just 100 calories more a day than your body needs (that would be a reasonably sized apple or perhaps a cookie), you will gain approximately 10 to 30 pounds a year.

• In the United States, from 1970 through 2008, we spent 42% less money on eating food at home, and 26% more eating away from home.

• 30% of our calories today come from snacks, desserts and pizza, while for young people between the ages of 14 to 18, 40% of their calories come from these same foods. And as you might guess, desserts, carbohydrate-rich foods and salads were the foods that had the highest differences between what was stated on the menu or the website and what was actually contained in the foods tested.

So what appears to be a small difference over time can add up to big pounds.  And as a nation, we are well into the “big pounds” game, as reflected in the second piece of research that garnered a good deal of media attention today.

Every year the Centers for Disease Control and Prevention looks at the percentage of people in the United States who are overweight and obese. And each year the number goes up and up and up. 

For 2010, the CDC has reported that 25% of the residents in 36 states were obese. Not just overweight, but obese. In many states-especially in the South-over 30% of the residents are obese. The leader was Mississippi where slightly more than one out of every three people is obese. Colorado was at the lower end of the list with 21%–or one out of five people-obese. But even the winner was a loser because in the past Colorado had far fewer obese people than was the case in 2010.

This is no idle discussion, especially as we look into the future.

Obesity impacts our lives and the length of our days. Cancer, heart disease, stroke, blood pressure and a number of other conditions are impacted by overweight and obesity. As we age, the impact of being overweight and obesity limits our mobility, just when we are looking forward to spending more time with our families and having the freedom to do more of the things we want to do.

I have become more and more convinced over time that although we can make the “big splash” by losing lots of weight over a relatively short period of time, it is the 100 calories here and 100 calories there that add up to big differences. 100 extra calories a day means one extra pound a month, 12 extra pounds a year. And who stops at just 100 extra calories?

As I have written many times before, this is a battle I know personally. It is difficult, frequently not successful, and full of traps.

One of the traps we don’t need, however, is inaccurate information from those who are supposed to be telling us the caloric content of the foods we eat. As this research paper suggests, those restaurants who serve us more and more frequently need to do a better job of telling us exactly what is in the food we eat-just as they tell us accurately how much we will have to pay for it at the cash register.

One final thought, from the editorial in JAMA, in the words of the author:

“Just as balancing a budget can prevent debt, balancing caloric intake with output can prevent added pounds. However, US residents seem to be struggling with both balancing acts. New, innovative, and effective approaches to teaching about energy balance and calorie control are greatly needed.”

So, the lesson is that just like “dollars in, dollars out” is important in our financial lives, so is “calories in, calories out” in helping us understand what makes us the way we are. We are doomed to failure if we don’t have that basic accurate information and understanding about the calories we consume and spend in our daily activities.  It’s time to get it right.

There’s a plaque on my daughter’s wall: “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

I was thinking about the word “moments”. We require the use of so many of our moments in those mindless activities for general survival. You know, sleeping, eating, sleeping, eating some more. Add to that our routine activities such as working for a living, managing relationships, minding a home, planning a vacation, taking time to exercise, and the moments are used up faster than we can think about them.

A cancer diagnosis forces us to face the brevity of our life’s “moments” and consider how to make each one of them more valuable. Another quote I found reflects this idea: “The whole of life is but a moment of time. It is our duty, therefore, to use it, not to misuse it.” (Plutarch) Perhaps it is our duty not to misuse our moments, but the desire not to misuse our moments is amplified with cancer staring us in the face.

What happened? What’s the difference in how we perceive our “moments” when facing cancer versus the time before cancer entered our lives? I think it’s simply the fact that we take each of those moments and slow down to put a value on them, sometimes for the first time in our lives. Another quote: “A man who dares waste one hour of time has not discovered the value of life.” (Charles Darwin) Cancer forces a startling reminder of the value of life. As a result, those “moments that take our breath away” are not a fleeting thought, but instead searched for with more intensity than before. Time still passes moment to moment, hour to hour, day by day, but the value of time, and of life, is contained in those moments. Taking care of the moments is key to taking care of our lives. “I recommend you take care of the minutes and the hours will take care of themselves.” (Earl of Chesterfield)

Reflecting on life from a moment-by-moment perspective instead of a year-by-year perspective can only do one thing: slow us down. It’s a good thing. One of my favorite prayers is called “Prayer for a Peaceful Heart” (adapted from Wilfred A. Peterson) and it contains a line in the middle about the “moments.”

Please Lord, slow me down, ease my pounding heart
Quiet my racing mind, steady my hurried steps
Amidst the confusion of my days
Grant me the calmness of your peace
Help me to know the truly restoring gift of sleep
Teach me the art of taking time off
To slow down to see the beauty in your creation
To chat with a friend
To read a few lines from a good book
Remind me each day that there is more to life than increasing in speed
It is living, each moment, with You and for You
Let me look upwards Into the branches of a towering oak
And know that it grew slowly and well
Please Lord, slow me down
Teach me to be gentle and humble of heart
Fearing nothing of this world
As you are my Lord
Grant me rest for my soul
Now and eternally with you
Amen

A new study by Australian medical researchers at Royal Prince Alfred Hospital in Sydney shows that mesothelioma patients are living longer today than they were 20 years ago.  Their increased longevity is credited to new treatment techniques and more experienced doctors.

Mesothelioma, a rare form of cancer most often affecting the lining of the lungs, is highly aggressive and is resistant to many cancer treatments making it a difficult disease to treat effectively. The average survival time for mesothelioma patients typically varies from 4 – 18 months.  With ongoing research to find a cure for mesothelioma, recent breakthroughs and increased knowledge among medical professionals has improved both the survival time and the quality of life for some mesothelioma patients.

Primarily, patients seek treatment at a mesothelioma specialty facility, such as Brigham and Women’s Hospital in Boston, MA where the International Mesothelioma Program (IMP) has been established, to ensure they get the latest treatment options.  The researchers say that with an uncommon disease such as mesothelioma, treatment at a medical center that specializes in asbestos-related disease and has handled many mesothelioma patients is a key to a better outcome.

The study categorized 540 patients with malignant pleural mesothelioma who underwent surgery between 1984 and 2008 into two groups of 270 patients each. One group consisted of patients who underwent surgery before September 1999. The other group included mesothelioma patients treated after that date.

In analyzing the groups, the researchers observed that patients in the later group tended to live approximately 13 months after diagnosis compared to 9 months for the first group.  They identified four factors that independently influenced patients’ survival:  treatment by experienced surgeons who had handled more than 100 mesothelioma cases, the type of surgery, the cellular subtype of the cancer and the use of pemetrexed chemotherapy.

The patients in the second group, with the longest survival, were more likely to undergo an extrapleural pneumonectomy, to have received post-operative radiation and chemotherapy consisting of pemetrexed combined with cisplatin or carboplatin, and often had the epithelial subtype of mesothelioma.  Epithelioid mesothelioma is the most common and treatable histological subtype and is diagnosed in more than half of all cases.

“It is likely that the improvement is due to a combination of factors, such as an increased aggressive surgical approach, familiarity with the surgical procedures, introducing chemo-/radiotherapy and accumulated clinical experience,” the Australian researchers said.

The study can be found in the June 2011 issue of the Annals of Thoracic Surgery and Cardiovascular Surgery.

“You have cancer.”

I gasped. The doctor said these words to my husband after a week-long hospital stay which included an assortment of medical tests to determine the source of his unexplained pain. We were forced into the battle. No swords, no shields, no plans in place; however, the battle against cancer had begun.

After the shock wore off, I will always remember the next conversation with my husband when the doctors left the room to give us privacy to cry together. The first words my husband said were: “I’ll fight this thing.” Tears of gratitude poured down my cheeks. No amount of support from others could replace the soul-wrenching truth: initially, the battle has to be fought by him and him alone. Only then can he move on and get outside help, too.

While the individual battle belongs to the patient, the overall fight is a community effort. Who makes up the community? It’s amazing to discover the multitude of resources that bond together in this cancer world. For starters, I was impressed with our team of medical professionals who seemed to take the word “doctor” to a new level. I had never before experienced such a level of sensitivity, care and expertise than when we met our oncologist and his staff.

Then there’s the online world, with blogs like this one, and individual posts by people who have been there before, all serving as cheerleaders to boost us along the path towards recovery. Online resources also provide educational tips and suggestions to continue to get information on what to do; what to think; what to eat; how to persevere. Joining an online community gives us a resource from people we would never have met otherwise. Then there are the people around us: family, friends, neighbors and strangers, who show up just when needed to be there in unique ways to provide support and joy.

It seems all the cancer survivors have on thing in common: they end up being more thoughtful and contemplative about life. They consider: what am I doing with my life? How can I make a difference? Gratitude and humility are a common factor. Hey—it’s how we all should live anyway, isn’t it?

The cancer world has shown itself to be a place of fear and uncertainty, but also a place where former strangers completely bond in a new mission: to fight this thing…together.

by Nancy Meredith
Mesothelioma patients, and other patients and their families battling one of the thousands of rare diseases in the United States, once again have a voice in congress with the re-establishment of the Rare Disease Congressional Caucus.  Led by U.S. Reps. Leonard Lance (NJ-7) and Joe Crowley (NY-7), the 112^th Congressional Caucus will “provide an important forum in Washington for the exchange of ideas and information related to rare diseases,” Lance said. 

In the United States, a rare or orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time.   Mesothelioma, an aggressive form of cancer primarily caused by exposure to airborne asbestos fibers that is diagnosed in 3,000 Americans each year, shares the orphan disease distinction with other well-known diseases including colon cancer, multiple sclerosis, AIDS, and cerebral palsy.  Between 85 and 90 percent of the orphan diseases are serious or life-threatening.   

The goals of the caucus, according to the congressmen, are to bring Congressional attention to the nearly 7,000 known rare diseases that currently have no approved therapies, ensure sufficient funding for research and orphan product development and to explore ways to incentivize companies to create new drugs, biologics and humanitarian use devices.  The caucus also provides an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns.

“Patients and families affected by a rare disease have been without a light at the end of the tunnel for far too long,” said Rep. Crowley. “With one out of every 10 Americans suffering from a rare disease, it is absolutely critical that we do all we can to identify research opportunities, therapy options, and treatment.”   Crowley, Chairman and CEO of Amicus Therapeutics, was the inspiration for the 2010 motion picture, “Extraordinary Measures” that chronicled his family’s decade-long search to find a cure for a rare illness afflicting two of their children.

Rare diseases have begun to get more attention in the United States.  This year the NIH announced the International Rare Disease Research Consortium committing “to the development of 200 new rare disease treatments by the year 2020 and the development of diagnostics for all rare disorders.”  The DoD continues to offer grants to fund mesothelioma research and is seeking applications for the 2011 award cycle.

Also, September 26^th was established as National Mesothelioma Awareness Day through a Presidential proclamation.  This does not require renewal and is designated for 2011 and for every year into the future.  Rare Disease Day is observed on the last day of February every year.

Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), said, “We are grateful to Congressmen Leonard Lance and Joe Crowley for the reestablishment of the Rare Disease Congressional Caucus in the 112th Congress. The changing health care environment creates special challenges for patients with rare diseases and we who advocate for the rare disease community seek to assure that federal policies are consistent with the health needs of patients.”

Find information on how to encourage a member of Congress to join the Rare Disease Caucus on NORD’s website.