Yes, You SHOULD Question Community Fundraisers For Kids With Cancer

Natasha
By Suzanne Leigh

If there was a fundraiser in your neighborhood to help a child with cancer, would you chip in? A few years ago, I’d have said “yes” – unequivocally. After more than six years in Cancerland, I’d say seeking answers before writing a check might be in the best interest of the child’s family.

That’s because unrealistic expectations, desperation and disgust with the medical establishment have fueled a few of the fundraisers that I’ve followed, and the person that stands to gain the least could be the patient.

Here are three red flags that indicate a poor outcome for a cancer fundraiser:

If parents want the child to be treated at the Burzynski Clinic
Sooner or later, most parents whose children’s prognoses are dismal will become aware of Dr. Stanislaw Burzynski, a Houston internist with no formal training in oncology, who has been claiming for decades that he can cure incurable cancers, while failing to demonstrate evidence of his treatment’s effectiveness to the FDA.*

The fruits of many a fundraiser from as far afield as Europe and New Zealand have ended up in Burzynski’s bank account, but it’s highly debatable if any lives have been saved by his treatment – sodium-rich drugs called antineoplastons that used to be made from blood and from urine collected in public parks and penitentiaries.

The parents of Josia Cotto, a 6-year-old from New Jersey with an inoperable brain tumor, turned to Burzynski in 2012 after learning that he might have only months to live. Tens of thousands of dollars were raised by neighbors and Josia’s school, but the child died two months after starting Burzynski’s treatment. A blood test taken a day after he passed away revealed his sodium was at a level that is typically fatal. The FDA has subsequently banned Burzynski from prescribing the drugs to more children.

But this hasn’t stopped the parents of children with cancer from clamoring for Burzynski’s treatment and trying to overturn the FDA ruling. A groundswell of support has surrounded 12-year-old McKenzie Lowe from New Hampshire, who suffers from the same brain tumor type as Josia. A t-shirt drive has been launched, restaurant servers have pledged to turn over their tips and local businesses are donating part of their proceeds to her Burzynski treatment fund.

Should McKenzie be deprived of the hope that Burzynski offers to those patients with deadly cancers? Much of the evidence indicates that McKenzie’s family, and their generous donors, would be deprived only of false hope.

For information about patients that Burzynski claims to have successfully treated, go to: http://www.burzynskipatientgroup.org/patient-medical-records
For information about patients who have died following Burzynski’s treatment, excerpted from patient family blogs and websites, go to: https://theotherburzynskipatientgroup.wordpress.com

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If a U.S. family wants their child to be treated overseas
Yes, our health care system is dysfunctional and access to it is restrictive to too many, but if a child is covered either by a parent’s insurance company or by government plans that are mandated to include low-income patients such as CHIP, Medicaid and Medicare, studies show that the U.S. might be the best place on the planet for cancer care.** One study compared cancer mortality rates among Americans over 65 – who are covered by Medicare – with seniors in the U.K., France and Germany. The U.S. trumped the European nations for cancer survival.

So why do some parents take their ailing children to Europe for treatment? A belief that a fresh start in a new country offers fresh hope; that European doctors are better or kinder?

A letter from the child’s oncologist stating their own recommendation that the child be treated abroad should be required before donations are solicited.

If there are concerns about how parents will use ‘treatment-related expenses’
Many donors want the child’s parents themselves to determine how funding should be spent. But the story of one community in Ireland that in 2010 rallied around Megan Malone, a 3-year-old with a brain tumor, and raised 180,000 euros ($250,560) to shoulder the financial blow of expenses during treatment at New York Presbyterian (an anonymous donor had agreed to foot most of the hospital bill) underscores the need for donors and beneficiaries to be on the same page about where the cash goes.

Megan’s parents John and Sheila Malone said that trustees of the fund, which had been set up to ensure money was “spent in an appropriate manner,” refused to reimburse them for what they considered to be reasonable living expenses during their months-long stay in a relative’s home close to the hospital where their daughter was treated.

Claims for a vacuum cleaner, microwave, TV, hairdryer, cosmetics, and toys and clothing for the Malones’ four children had been rejected by the trustees, the couple said, together with charges for phone calls, restaurant meals and most groceries, their own health insurance and that of Megan’s siblings, plus the airfare of a babysitter who had traveled with the family to pitch in with childcare.

It’s not clear how finances were resolved during Megan’s treatment at two U.S. hospitals, which continued for longer than anticipated due to subsequent trips across the Atlantic following disease progression. But there’s no doubt that the disconnect between parents and donors led to ill-will among those that had extended a hand to save a sick child, and untold stress and torment to the Malones. Megan passed away in New York two years after diagnosis.***

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There’s another side to cancer fundraisers: those parents that dupe their communities into believing their healthy child is critically sick in a bid to grab cash and sympathy. (The latest con-mom is Sandy Nguyen of Colorado, who told everyone including her son that he had bone cancer and that he had months to live. This prompted a flurry of donations that funded a family getaway to Disneyland.) However, although these scams are lapped up by the press, my guess is that bogus cancer fundraisers are relatively few.

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Children with cancer always deserve support and generosity. But bypassing a fundraiser with a questionable objective doesn’t mean turning your back on the patient and their family. Buying a gas card or parking pass; paying for house-cleaning and restaurant-delivery services are gifts that will lift at least a little of the family’s financial burden and free the parents to spend more time with their sick child.

* Liz Szabo: Doctor accused of selling false hope to families http://www.usatoday.com/story/news/nation/2013/11/15/stanislaw-burzynski-cancer-controversy/2994561/
** Samuel Metz, M.D.: Do we really have the world’s best cancer care? http://www.kevinmd.com/blog/2012/12/worlds-cancer-care.html
*** CaringBridge journal for Megan Malone http://www.caringbridge.org/visit/meganmalone

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