Help for Underinsured Patients!

March 17, 2010 1 comment

PAF Underinsured DirectoryPatient Advocate Foundation Launches National Underinsured Resource Directory

NPAF’s sister organization, Patient Advocate Foundation, has recently launched a ground-breaking new online tool called the National Underinsured Resource Directory  which is intended to help underinsured individuals and families locate important resources and seek alternative coverage options or methods to cover their healthcare needs.
The National Underinsured Resource Directory is available through an online interactive tutorial program, and a written publication that supports the program.  The comprehensive online tool will help underinsured Americans faced with high out-of-pocket costs locate valuable resources and action steps to provide financial relief.
“We are pleased to provide this valuable tool to the millions of Americans facing problems securing critical medical care services due to their inadequate health insurance benefits,” said Nancy Davenport-Ennis, Founder and CEO of PAF.  “Patients across the country will be able to gather information from the Q&A and action steps we have put together, improving their access to the quality care they need and deserve.”
NPAF and PAF encourage you to utilize the National Underinsured Resource Directory if you are underinsured and struggling to meet out-of-pocket obligations.  In addition, please share information about this valuable resource with your family and friends who may find it beneficial.
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life-threatening, chronic or debilitating diseases.  NPAF and PAF were founded on the principle that health care is a basic human need and shared social responsibility.  If you are a patient in need, for more information visit or call PAF toll-free at 1-800-532-5274.

Note: In the spirit of full and open disclosure, I must state that in addition to currently battling my own cancer, I am a volunteer State Policy Liaison with the National Patient Advocate Foundation (NPAF),  the sister organization to PAF. 
NPAF is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.  NPAF translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.


PICC or PORT Line for Chemo?

March 10, 2010 10 comments

To PICC or PORT, that is the question:” With apologies to the Bard of Avon, my topic today is to discuss some of the differences between a PICC line and a PORT for chemotherapy. 

A PICC is a Peripherally Inserted Central Catheter.  It is essentially an intravenous (IV) line that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines such as Central Lines or Ports as it terminates into a large vessel near the heart (the superior vena cava). However, unlike other central lines, its point of insertion is from the periphery of the body and usually a vein in the upper arm is the most common insertion point.

Unlike a standard IV line which is inserted in an arm or hand vein and terminates after only a few centimeters, A PICC line is usually inserted in the arm using ultrasound to guide the specially trained nurse or technician who is doing the insertion.  PICC lines differ from peripheral IV access but are similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access, such as chemotherapy, prolonged antibiotic treatment or TPN nutrition.   Read more…

Atlanta Area Cholangiocarcinoma Patient Support Group

March 4, 2010 1 comment


Peach State Support Group

New Atlanta, Georgia CCA Support Group


I realize that this is specific to those living or having treatment in the Atlanta, Georgia area but wanted to help get the word out about a new support group that will be meeting at Emory University Hospital in Atlanta on the third Friday of each month beginning in April.         

It is open to cholangiocarcinoma patients and their family/caregivers and will be moderated by a member of the Emory University Social Work Team.  Support groups are a great way for patients and caregivers alike to get together and talk about issues they face in fighting the disease, dealing with treatment and coping in general.        

Here are the details:        

What:   Cholangiocarcinoma Patient & Caregiver Support Group        

Where: Emory University Winship Cancer Center, Room C3018      

The Winship Cancer Center is located at 1365-C Clifton Road NE, Atlanta, GA 30322. Click here for directions:*uyHkksF738        

When:   Third Friday of Each Month (Starting April 16th) from 12:00noon to 1:30pm        

Contact: Leave me a comment or email me if you need further information.

Nutrition, Cancer and Chemotherapy

February 25, 2010 3 comments

My guest blogger today is  Ms. Tiffany Barrett, a Clinical Dietitian at the Winship Cancer Institute of Emory University in Atlanta, GA.  Ms. Barrett writes about the importance of maintaining weight and adequate  protein intake while undergoing chemotherapy.

Maintaining adequate nutrition is an important part of your cancer treatment.  Eating a variety of foods will help you obtain the proper amount of calories and protein.  Getting enough protein is important to the healing process as your body uses protein to rebuild tissue.  Protein requirements are often higher in cancer patients because of the change in protein metabolism.  Without adequate protein the breakdown of lean body mass is increased from the demands of the tumor and treatment.  Loss of lean body mass can lead to inability to heal, decreased strength, weakened immune system, loss in independence and decreased quality of life.  And even if you are overweight, losing weight is not healthy or recommended during treatment.

 Try eating every 2-3 hours meals of protein and calorie dense foods.  Excellent protein sources include fish, poultry, eggs, dairy, legumes and soy.  There are several commercial oral supplements on the market to help provide higher calories and protein.  Add protein to foods by mixing protein powder or powdered milk to beverages, casseroles, soups, mashed potatoes or hot cereals.  Make your own smoothie or milkshake by adding whey protein isolate or egg protein powder.  These protein supplements can be found at most drug stores and nutrition stores.  To add variety and increased nutrition mix, blend with fresh or frozen fruits.  Good snack choices include peanut butter, nuts, dried fruit, cheese, yogurt and protein bars.  Think of food as the fuel necessary to get you through treatment.

Tiffany Barrett MS, RD, CSO, LD 

Clinical Dietitian

Winship Cancer Institute of Emory University

Tarceva® (erlotinib) Skin Rash

February 22, 2010 5 comments

Authors Note: Different classes of drugs that show anti-Epidermal Growth Factor (EGFR) activity are being used to treat cholangiocarcinoma (CCA).  There are several drugs that show this effect, including Erbitux® (cetuximab), Iressa® (gefitinib) and Tarceva® (erlotinib).  Tarceva is the drug I am currently taking and thus the focus of this post.     

The Tyrosine Kinase inhibitor erlotinib (trade name: Tarceva®, manufactured by: OSI Pharmaceuticals, Distributed by Genentech) has shown anti-Epidermal Growth Factor (EGFR) activity and is being used for cholangiocarcinoma (CCA) patients (1,2).  Pancreatic tumors, colorectal tumors, non small cell lung cancer, and tumors of the biliary tract such as CCA often show over expression of EGFR (2,3,4).  Alterations in the function of EGFR lead to cell growth, invasion, angiogenesis, and metastases. Over expression has also been associated with a poorer prognosis (5,6).    

The convenience of a daily oral chemotherapy regimen Read more…

Clinical Trials & Cholangiocarcinoma

February 19, 2010 Leave a comment

Today I had the privilege of joining a Webinar sponsored by the Cholangiocarcinoma Foundation.  First, kudos to these good folks for sponsoring Jack Welch, M.D., Ph.D. of the National Cancer Institute’s Division of Cancer Treatment and Diagnosis.  Dr. Welch gave an informative lecture on the ABC’s of Clinical Trials. 

I won’t go into all of the details discussed, but some statistics Dr. Welch cited caught my attention:  There are approximately 5,000 new cases of biliary tract cancer diagnosed in the U.S. per year.  Contrast this to the 146,00 new cases of Colon Cancer per year or the 219,000 cases of lung cancer and you can easily see why there are not as many clinical trials on biliary cancers like cholangiocarcinoma (CCA).   More disturbing is the fact that only approximately 3% of U.S. Adult cancer patients participate in clinical trials.  Compare this to 90% of children diagnosed with leukemia participating in clinical trials.

However, this is not a reason to lose hope!  Despite the relative rarity of CCA and the fact that it has typically carried with it a poor prognosis, new treatments have Read more…

Healthcare Reform – Act Now!

February 15, 2010 3 comments

Capitol in Snow

Congress gets a snow day


While Washington, D.C. is digging out of the recent snowfall, congress is on a short recess spending time this week in their districts.  Now is the perfect time to let your elected officials know how important it is to pass meaningful healthcare reform soon!  This isn’t a Democrat or Republican issue…it’s a patient issue.  If you’re reading this post, it’s because you share an interest in patient issues, especially surrounding those with chronic, debilitating and life threatening illnesses like cancer.  If you are a cancer patient, you know firsthand how difficult navigating through the insurance coverage for your disease is – if you’re lucky enough to have insurance.  If not, well you’ve got company in the 45 million Americans who are uninsured1.  Even with insurance, many of our fellow Americans are one cancer diagnosis away from medical bankruptcy;  In a recent study of personal bankruptcies in the United States, over 62% are related in part to overwhelming medical expenses due to a medical condition2.  This is 20 percentage points higher than respondents attributed to medical reasons in 2001.  Pre-existing exclusions, waiting periods for treatment or loss of coverage is a real threat to the 45% of the population or 133 million Americans managing a chronic disease3.  These people are essentially one job change away from a 12 month pre-existing exclusion for their disease.  This “Job-Lock” is not a good position to be in during these economic times.     

So what can you do?  The answer is, in fact, quite a lot.  Let your elected officials know that they must pass reform now!  There are two bills pending in congress – one in the house and one in the senate – both of which cover most of the necessary corrections to our current healthcare delivery and insurance system such as the elimination of pre-existing conditions and caps on out of pocket expenses to protect patients from medical bankruptcy.   Below is a link to a National Patient Advocate Foundation  Action Alert.  It allows you to enter your demographic information and it will then identify for you your Congressional Representative and U.S. Senators.  It has editable text that urges congress to pass meaningful reform and you can designate whether it is to be sent via email, fax or letter.  It is a convenient, quick way to get the message to congress that they must act now to pass meaningful healthcare reform.     Click on this URL to take action now:  Or you can copy the entire URL and paste it into your Web browser.       

 If ever congress needed to hear from Americans about the importance of passing meaningful healthcare reform, it is now.  Don’t be mislead by the hype, fear mongering and sound bites of those who want to maintain the status quo – it is unacceptable!  The option to do nothing or to scrap the hard work and legislation that have been crafted so far and start again (as a delay tactic) is not an option.       

Note: In the spirit of full and open disclosure, I must state that in addition to currently battling my own cancer, I am a volunteer for the National Patient Advocate Foundation (NPAF).  NPAF is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.  NPAF translates the experience of millions of patients who have been helped by our companion, Patient Advocate Foundation, which provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.       


 1. U.S Census Bureau. “Income, Poverty, and Health Insurance Coverage in the United States: 2007.” August, 2008       

 2. David U. Himmelstein, MD, Deborah Thorne, PhD, Elizabeth Warren, JD, Steffie Woolhandler, MD, MPH. “Medical Bankruptcy in the United States, 2007: Results of a National Study.” American Journal of Medicine, Volume 20, No. 10, 2009.        

 3. Wu, S. Green, A. Projection of Chronic Illness Prevalence and Cost Inflation, RAND Corporation, October 2000.