BY KATHY LATOUR | JUNE 17, 2013
The Tampa Bay Times did a story on the country's worst charities, and it won't surprise you how many are for cancer.
These aren't charities that are trying their best to help, these are charities that are trying their best to get you to give them money so they can live an expensive lifestyle. They have no intention of helping anyone. They just want you to think they are so they can get your money. (You can read the full story here.)
Charities that don't do what they are supposed to with donated money are a particular issue of mine because the millions and millions of dollars that they bilk from honest people in the name of true pain and suffering makes me . . . well it makes me really mad. The reporter did a little math and came up with these figures for the top 100.
$970.6 million cash paid to solicitors -- $380.3 million cash to the charities -- $49.1 million to direct cash aid --
If you are going to make a donation to a charity, do your homework. First, read up on these worst charities and see how they run their scam.
If you are called or someone comes to your door, don't be taken in, ask for their documentation and then do your research. Don't let anyone bully you into giving them money.
Here is what you need to know:
What does it take to be a good nonprofit? What questions do you need to ask? Nonprofits are awarded their status by the IRS based on having a board of directors and a mission. It's not hard to do, which makes fraud easy. A legitimate nonprofit takes lots of hard work to raise money and to provide a mission. This doesn't mean there is no paid staff. Nonprofits have to be run like a business, and because of fraud, the IRS now has a ruling that you can walk into any nonprofit and ask for their 990, which is documentation of what they have raised and what they declared to the IRS. Of course, those documents can also be falsified. So there are professional organizations who judge the legitimacy of nonprofits to help us know where to give money.
The best of these is Charity Navigator. Go to this site and put in the name of a nonprofit you want to support and see where they are graded in a number of areas. Also, if you are looking for a place to give a donation, you can see which nonprofit would do the most with your money. So if it's mammograms for poor women you want, search for the nonprofits that provide those and have a four-star rating and give to that group.
Charity Navigator also offers education on how to know when a nonprofit is trying to misdirect you. They have provided one link called The Top 10 Practices of Savvy Donors, which I highly recommend. But before you go there, I have a few suggestions of my own. 1. In your research on a nonprofit, don't go to their website. It's not hard to lie on a website or have a few pretty pictures to document lies. Just check the website of the first organization on the list of worst charities. 2. Don't let them talk you into it when you are at your worst. It's not above these people to call you when the obituary is in the paper.
The list given by Charity Navigator includes being proactive, or knowing exactly what the group does with your money. What is their mission? If they can't tell you when you ask, tell them you will get back to them and then do your research.
Fake charities use paid middlemen, either phone solicitors or door to door salesmen. NEVER give out your personal information over the phone and reconsider even giving funds to a group that uses telemarketing – except that some groups you may have given to in the past that are well known in the community may call to have you renew your donation.
Be very careful about sound-alike names. The Make-a-Wish Foundation is a national foundation that helps children with terminal illnesses and it has been in operation for many years. If you go to Charity Navigator, you will see that it is a four-star charity in a number of states (and does less better in others since it has state affiliates). But it is in no way connected to Kids Wish Network, which has the distinction of being at the top of the worst charities list.
Believe it or not, the basics should also be checked. Is the group truly a 501c(3)status, and that means they should be on Charity Navigator, and if they aren't they should have a good reason. (Let me put a word in here for the nonprofits that are not fraudulent but struggling. If that is the case and you think their mission is needed and relevant, then join the board and help them build the program.)
But back to the bad guys.
Ask to see the financials to determine if the amount of money spent on mission is 65 to 75 cents of each dollar raised. No more than $.35 of each dollar should be spent on development (fundraising).
If you plan to make a large donation, ask to see the mission in action. What exactly are they doing? Understand the problem in the community and see who else is working to solve it. Does this nonprofit even need to exist or could it do better to merge its energy with another group. Should you suggest this?
It doesn't matter how much you plan to give, it's your money and you can ask all the questions you want to be sure it will be spent the way you want. Right now, billions, yes billions is going into cars, lake houses and high living for people who have duped people into believing their money will provide something for a community in need.
Don't let it happen again. And, it's not too late. Go back to them and ask for the money back. Call the Better Business Bureau, call the media, call the IRS. Put them out of business.
I got a fundraising note on my door a few years ago. After starting two nonprofits and raising considerable money in my life, I knew it looked phony. It was also for breast cancer, and I had never heard of it. Instead of sending in a check in the stamped envelope, I called the number on the letter and got an answering service. I left my number, fully expecting not to get a call back. When I did, I asked for the man who had signed the letter. The person said he wasn't in, and why did I want to talk to him. I said I wanted to ask some questions about what they did.
She said she would have him call me. I never heard back. There were clearly too many other suckers to focus on than to spend time with me.
It's your hard-earned money. Don't give it to someone who will use it for a lake house.RELATED POSTS
BY KATHY LATOUR | JUNE 12, 2013
When I first started reading studies, I remember reading one in particular and everyone was really excited about the fact that it offered four months of median survival time.
That didn't seem like a lot to me, until I understood what it meant.
Median survival means that there were some patients who lived much longer on the drug, and some who lived a much shorter time on the drug.
To get four months, they took numbers and averaged them. To be more specific, four months of median survival time means that half of the patients on the treatment died before four months, but also that half of the patients lived beyond four months; some may have lived much longer than four months. Looking at the actual study can illustrate this effect.
Also, unless you have the whole study in front of you, what you don't know is how sick the patients were who took the drug, and that's important. New drugs are often given to patients who have no more options for the obvious reason that they are not going to give an experimental drug to a patient who could get some response from a drug that has shown efficacy.
Another aspect you have to take into account is the patient. What we are learning is that in each group of patients who take a drug, there may be one or two who respond very well. For some reason unknown to anyone, one or two patients may have a great reaction to the drug and their cancer may go into remission or reduce in size.
When these cases are thrown in with the others, it skews the results, but it also makes news and sometimes results in the study being stopped early so the drug can be given to more patients who have one or two similarities that indicate they may respond to the drug.
Right now researchers are trying to find those small pools of patients who respond to certain drugs and single them out. It's the reason that many patients now get a cocktail of chemotherapy drugs instead of just one. They may have one drug that covers all dividing cells and then one that only targets a particular protein known to help that one kind of cancer grow. It gets very complicated.
So, when you hear of a drug showing a median of three months of extended life, look at the surrounding information in the study. Did one patient live a year? Did one have a remarkable response that calls for further investigation?
You may remember the big noise around Avastin when the powers that be wanted to remove it from metastatic breast cancer use. Well there is a subset of women for whom Avastin works wonders. They didn't want it removed for obvious reasons. But there are very few of them.
And as my friend Suzanne Lindley says, even if it is only six months you get, that's half a year and two seasons to watch a 4-year-old begin to notice new things in her life and have new memories. Six months is a lot of live when you are facing not having it.RELATED POSTS
BY SUZANNE LINDLEY | JUNE 11, 2013
Even though my teeth have always been crooked, smiling has been as natural as breathing for me. I love to smile! When I was young, I pretended my teeth were different and that there was a brilliance of white and perfect alignment. In my dreams, they were flawless. As I aged, the idea lost importance, and it didn't matter as much. Life funneled reason upon reason for me to smile regardless.
Several years ago I was given even more reason to appreciate the gift of my smile when I was a passenger in a terrible automobile accident. My upper jaw was fractured and three of my front teeth were lost (just not the crooked one). I was simply thankful to be alive and smiled even more.
This past year, however, has given new meaning to the phrase "grin and bear it." Cancer, chemotherapy and other treatments have taken a toll on my oral health and caught up with me. Life unfolded and my teeth were pushed to the bottom of the priority list. Insurance would only pay for a small portion of the work that needed to be done. I started to feel that I could no longer smile. When I did, I hid my teeth behind lips pursed shut. I began talking with a hand over my mouth and attempted to cover the havoc and embarrassment with breath mints, strips and sprays.
Then a tooth broke. Suddenly I joined the 400,000 other cancer survivors that will experience treatment-related oral complications this year. I reluctantly and fearfully traded my comfy chemo chair for a comfy dental chair. For the past few months I have been thankful for the patient and gentle care of Dr. Benjamin Bunt. He and his team have been wonderful as they worked to get my dental problems under control; even making a root canal seem like not such a terrible thing.
This morning I arrived in the office once again. Nervous at first, I gripped the arms of the chair tightly. Dr. Bunt went to work sculpting, lasering and shaping. Four hours later, he held up a mirror as I swallowed back tears. In the midst of cancer and the chaos of chemo, he created a smile that I've dreamed of my entire life. As I type these words, the tears are no longer contained.
So the next time you see me - watch for my smile. It won't be the old familiar one, but instead a brighter, whiter and healthier one! That perfect smile - it's mine!RELATED POSTS
BY GUEST BLOGGER | JUNE 6, 2013
Michael Wong, melanoma oncologist and CURE advisory board member, explains how recent studies are targeting the PD-1 pathway and describes why there is so much excitement surrounding this new class of immunotherapy.RELATED POSTS
BY DEBU TRIPATHY | JUNE 5, 2013
Debu Tripathy, MD, editor-in-chief of CURE, discusses the BOLERO-3 study, which combines the mTOR inhibitor, everolimus, with Herceptin (trastuzumab) and chemotherapy in patients whose cancers progressed on previous treatment. This study was presented at the 2013 American Society of Clinical Oncology's annual meeting in Chicago.
BY DEBU TRIPATHY | JUNE 5, 2013
Debu Tripathy, MD, editor-in-chief of CURE, discusses preliminary studies on combining Herceptin (trastuzumab) with existing drugs to treat HER2-positive breast cancer. These highlighted studies were presented at the 2013 American Society of Clinical Oncology's annual meeting in Chicago.
BY GUEST BLOGGER | JUNE 5, 2013
My cancer center is also a teaching hospital, which means I often encounter the future of cancer treatment: oncologists in training. They usually enter the room before my doctor and ask about my diagnosis, symptoms and drug side effects. I visit my oncologist enough for him to know the answers to their questions, but the exercise helps teach them good bedside manner.
I met my first oncology fellow soon after hearing the "C" word for the first time; so understandably, I was more than a little overwhelmed. The one thing my husband and I remembered from the discussion was that his name was Dr. Goldfarb, so from that moment on, every doctor-in-training I have met is simply referred to as a "Goldfarb."
Now that I am a veteran in the cancer center, I have a hidden agenda when I meet a Goldfarb: I want to show them I am a person, not a textbook statistic. The ability to see patients as people instead of cancer cases is a valuable skill for an oncologist – one that will no doubt be appreciated by the thousands of patients a doctor will treat throughout his or her career.
I tell them all how I was diagnosed with breast cancer at 29 with no strong family history. Thank goodness my gynecologist advocated for a biopsy even though the mammogram and ultrasound said my lump didn't have the characteristics of cancer. Statistically-speaking, it shouldn't have been cancer...but it was. My initial treatment included a double mastectomy with six hearty rounds of chemo. Statistically, I wasn't likely to have a recurrence...but I did. These are good lessons for anyone to learn, particularly doctors who will be diagnosing future cancer patients.
Last year, I met a Goldfarb in my breast oncologist's office one week and saw him in the gynecological oncologist's office the following week. Upon our second introduction, I laughed, "We actually met last week. Looks like we get to talk about the north AND south poles!" He just stared at the floor and avoided eye contact – I guess the humor of the situation was lost on him.
While most Goldfarbs take the opportunity to learn from patients, my most recent Goldfarb visit was extremely unsettling. I was telling him how it took almost six months to diagnose my recurrence because my X-rays were clean, despite a persistent cough and severe shoulder pain. He replied, "Well, statistics show that finding metastatic recurrence earlier doesn't mean you'll live any longer."
In the four years since my first diagnosis, I have never felt more like a cancer statistic than I did at that moment. I'm not sure if Goldfarb was trying to sound knowledgeable, or if he is arrogant enough to believe we know everything about this wacky disease. Cancer is so individualized, we don't always know why a drug will work in one case and not another – a fact that is scary and encouraging at the same time.
I quipped back, "Well, I have metastases to the lungs, liver and bones. Had we found my recurrence earlier, perhaps it would just be in my bones. And if I hadn't had so many spots by the time we discovered it, maybe I wouldn't have just spent 10 grueling months getting weekly chemo!"
My husband likes to say that I play in the small percentages, and I tend to agree. I was in the small percentage of women diagnosed in her 20s. I am in the small percentage of women who are metastatic in her 30s. And I hope to be in the lucky percentage of women that dies of something other than cancer well into my 90s.
We are not cancer statistics – we are people! I don't care how long the average woman lives with metastatic breast cancer, because frankly – who wants to settle for being average?
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.RELATED POSTS
BY ELIZABETH WHITTINGTON | JUNE 3, 2013
A disappointing showing of a phase 3 study found that Avastin (bevacizumab) in newly diagnosed glioblastoma did not prolong survival. The study was presented as one of the headlining studies in the Plenary session at the annual meeting on Sunday.
Glioblastoma is an aggressive, hard-to-treat brain tumor that affects about 10,000 people at year in the U.S. Average survival for this type of brain tumor is fewer than 18 months, and is treated with a variety of radiation, surgery and chemotherapy, including temozolomide.
Avastin was granted accelerated approval for treatment of recurrent glioblastoma in 2009 due to promising phase 2 studies that showed the drug delayed disease progression. This makes sense because the tumor is highly vascular, sending out proteins to encourage blood vessel growth to the tumor to help grow--a process called angiogenesis. Avastin, which blocks the pathway involving this protein, called vascular endothelial growth factor, would be a logical choice to treat newly diagnosed glioblastoma. The thought was the earlier you treat this tumor with an anti-angiogenic therapy, the less lethal it would be.
With that in mind, the drug is sometimes used to treat newly diagnosed patients in the hopes that the same effect seen in recurrent glioblastoma would apply to this patient population.
Unfortunately, that's not the case. This latest large-scale phase 3 study, which was to confirm the effectiveness of Avastin and possibly improve survival, actually found that the drug conveyed no benefit. Survival was 16.1 months in the placebo arm and 15.7 months in the Avastin arm. Progression-free survival was 7.3 months and 10.7 months, respectively. Although the trend was toward Avastin, the difference could be just due to chance (not statistically significant.) Patients who were randomized to receive Avastin also had more side effects, including low platelet counts, which can contribute to bleeding problems, as well as blood clots and high blood pressure.
The study was designed to look for overall survival and progression-free survival at the same time, which was interesting (usually it's one or the other). The researchers required tumor tissue samples to provide molecular testing, which will be helpful in the long run, because they are looking for any sign that Avastin may work in a certain group of patients. They also recorded patient outcomes, symptom burden, quality of life and cognitive function.
How do these results compare to another phase 3 study in newly diagnosed glioblastoma patients? The AVAglio trial data released last year found that the addition of Avastin to temozolomide and radiation delayed progression-free survival, but no difference in overall survival has been seen yet. There are slight differences in the trial, so researchers are watching the two studies closely to gain additional insight and data on different subsets of patients.
Unfortunately, the past few phase 3 studies in brain cancer have all been disappointing, ranging from the Avastin trial to cilengitide to cediranib.
It's important to note that these results do not affect the use of Avastin in recurrent glioblastoma.RELATED POSTS
BY JON GARINN | JUNE 3, 2013
Every year, about 60,000 Americans receive a diagnosis of thyroid cancer. The kinase inhibitor Nexavar (sorafenib), already approved for kidney and liver cancers, has been shown to keep thyroid cancer from progressing for five months, according to results of a phase 3 study presented at ASCO's annual meeting.
Although thyroid cancer is highly curable with surgery and radioactive iodine treatment, the disease becomes resistant to therapies in about 10 percent of patients, often metastasizing to the lymph nodes, lungs, bones and other sites. For nearly four decades, the only approved treatment for patients whose disease had progressed was doxorubicin, which was avoided because it was ineffective and highly toxic.
The multicenter, international DECISION trial included 417 participants with advanced differentiated thyroid cancer that had progressed within the prior 14 months on radioactive iodine. Participants were randomized to take Nexavar or a placebo. Those in the Nexavar group experienced greater tumor shrinkage (12 percent versus 0.5 percent), a higher rate of stable disease (42 percent versus 33 percent at six months), and a longer period of time to disease progression (10.8 versus 5.8 months).
Side effects were similar to those experienced by patients taking Nexavar for liver and kidney cancers: rash, fatigue, weight loss, hair loss, hypertension and diarrhea.
Of the four types of thyroid cancer (papillary, follicular, medullary and anaplastic), the vast majority (80 to 90 percent) of cases are papillary and follicular--the types Nexavar targets. Affecting more women than men, thyroid cancer is the fastest-increasing cancer in the U.S.RELATED POSTS
BY ELIZABETH WHITTINGTON | JUNE 3, 2013
In a cancer that doesn't have many treatment options, any gains are considered a success.
Uveal melanoma, although rare, is the most common eye cancer in adults, affecting nearly 2500 individuals a year. While surgery and radiation are standard treatments, once the disease becomes metastatic it is almost impossible to treat successfully.
Researchers decided to test a MEK inhibitor, selumitinib, in this patient population. The thought was that because most of these tumors express a certain gene mutation it would respond to this particular targeted drug.
No standard treatments exist, which made a control group hard to create, says lead author. Instead of making it a placebo-based trial, researchers compared the MEK inhibitor with a temzolomide, a brain cancer drug that has been used to treat skin cancers.
Details of the clinical trial can be found at clinicaltrials.gov.
Richard D. Carvajal, MD, a medical oncologist at Memorial Sloan-Kettering Cancer Center describes the results of the selumetinib study. Photo by ©ASCO/Scott Morgan 2013