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Thank you Connie. St. Judes wouldn't even let us in the parking lot. We drove over 800 miles just to be forced to stand at the gates waiting for someone to agree to see us. After an hour wait, a Dr. agreed to talk to us, but wouldn't even touch Danielle. We never knew that St. Judes was a "compound". All we wanted was a second opinion but we were sent home. They billed our insurance and our insurance company considered that our second opinion and refused to pay for the month stay in Cincinnati's Childrens Hospital. I would never refer anyone to St. Judes because of the way we were treated. Like their ad says "No child is turned away" but mine was.
I really hate this for both of you. Our doctor had to call and make sure that they would take my son as a patient before we even went to Memphis. First, he had to have not started any other treatment and they had to have a clinical trial available for him to enroll in. On their website you can find a list of the current clinical trials that are open for patients. Yes they do have gates and guards and that is for the safety of everyone on the campus. I am glad that they do have it even though it is a pain. The first weekend we were in Memphis someone broke into our vehicle and tried to steal it in the middle of the day at an Outback Rest. & we were parked in a good spot. I never felt safe in downtown Memphis. The Rondald McDonald House also had gates, guards and fences around it for safety issues. St. Jude should do a better job in explaining how they accept patients so that the public understands and that there are no misunderstandings. It is so sad to show up with a sick child and then be sent away. My heart goes out to everyone that has been treated this way. St. Jude should show compassion and greet the families and explain why they can or cannot take the child as a patient. Every child deserves this. I will make sure to send this message in with the monies that we have raised with this summers fundraiser for St. Jude.
God Bless You All,
Sheila
St. Jude gets credit for putting a face to childhood cancer and getting it in the mainstream media. I am grateful that they are working hard to conquer some diseases like AT/RT, a rare brain tumor with a horrible prognosis. I am thrilled that the St. Jude doctors collaborated with my son's oncologist when they were trying to figure out how to treat his rhabdoid kidney tumor. I think it is great that they have so many Hollywood stars behind them.

That being said I don't like how St. Jude jockeys for position. I recently heard that St. Jude has a deal with The Today Show and the show has agreed to only feature St. Jude when they do a feature on childhood cancer. This leaves all of the other foundations without the opportunity to get in the lime light and showcase their good work. It feels like St. Jude sometimes puts their needs in front of the world's need for a cure for childhood cancer.

If St. Jude could be more transparent and honest in their messaging and willingly make room (or even support) the little guy that struggles for ever dollar raised, I would be a fan. For now I will praise their work to find a cure, but give my time, energy and money to ALSF, St. baldrick's, Rally and Seattle Children's (which is my local hospital).
This is just to clarify a few points--

St. Jude's motto is not that no child is turned away, the motto is that "No child should die in the dawn of life".

Danny Thomas' vision and their policy is that no child will ever be turned away for inability to pay. From the 2009 annual report:

Children must meet the following medical criteria for acceptance to St. Jude:
  • They must have a disease currently under study;
  • they must be referred by their physicians;
  • normally they must be no older than 18 years of age; and,
  • except in certain cases, they must not have received prior extensive treatment at another institution.

Once accepted, all St. Jude patients are treated regardless of ability to pay. St. Jude is the only pediatric cancer research center where families never pay for treatments not covered by insurance. No child is ever denied treatment because of a family’s inability to pay.

 

As for their rating on Charity Navigator, right now they have the same number of stars as CureSearch and within the 3 stars they have a slightly higher rating.

 

I view the 3-star rating as a good rating for both institutions, CureSearch has a lower rating I believe because of their lower financial reserves.  Typically St. Jude has been downgraded for their large financial reserve, Charity Navigator likes to see an institution spend the money they receive in a year.

 

If you look at the annual report, you will see that donations to St. Jude are down and that in the most recent year they spent more than they took in.  Part of the reason that St. Jude maintains such large reserves is that many of their patients end up on treatment protocols spanning many years, some of the leukemia protocols can last 3 years.

 

During those 3 years, St. Jude may be housing the family, they take in 400+ new kids, but they see many more than that in a year.  They follow their kids for a minimum of 10 years after treatment ends, and if relapse occurs during that period it restarts the 10-year time clock.

 

CureSearch as a grant-making organization doesn't have the same need to maintain large reserves, so I don't view St. Jude's large reserves or CureSearch's smaller reserves as a strike against either one of them.

 

But the antagonism against St. Jude is something I frankly don't really understand.  CureSearch makes grants, St. Jude is a full-care hospital, following patients from diagnosis for at least 10 years if they are survivors.  St. Jude builds hospital rooms and cafeterias and hires shuttle drivers and buys new equipment and airline tickets and patient/family housing and more things than I can possibly detail.  The bulk of their annual expenditures is not patient care, it is the cost of research which they take from the laboratory bench through all the intermediate steps to clinical trials.

 

CureSearch provides a mechanism for hospitals that don't have the resources to conduct their own research to offer collaborate with other COG institutions and offer clinical trials and treatment options to patients that smaller institutions could never offer.

 

PBTC (Pediatric Brain Tumor Consortium) members are COG hospitals that meet high quality standards and have the ability to accrue a certain number of patients each year.  PBTC does a similar thing as CureSearch but just for brain tumors, and since the PBTC members are all big kids on the block, they have the resources to offer things that might not be available at non-PBTC hospitals.  PBTC trials that move past phase III are available to all COG hospitals.

 

It's all good for our kids. 

 

Apples and oranges, both with worthy goals.

 

Thank you so much for explaining this so well.

St. Jude's Childrens' is an amazing place:-)  Any parent who has had their child treated there would tell you there are no words to express the wonderful work they are doing there.  My daughter who is now 11 has been a patient there since 2002 and I am certain I have St. Jude's to thank for her largely event free survival.  I would challenge those posting negative comments regarding St. Jude's to really check their facts with staff at St. Jude's before exacting judgement.  Here are a few things I wanted to share from my experience.

1.  Regarding who St. Jude's accepts:  My daughter was a patient at Iowa City prior to her treatment at St. Jude's.  Furthermore, she was a participant in a Phase II study at Iowa City.  A physician at Iowa City told my family that St. Jude's would not accept my daughter.  Uncomfortable with the Radiation plan at Iowa City I contacted St. Jude's Physician, Dr. Thomas Merchant myself.  Within 15 minutes of my first email I had a response and within 15 minutes of my second email a few days later I received a telephone call from Dr. Merchant after 7pm at night!  My daughter WAS accepted by him as a participant in the RT1 protocol.  So clearly, at least at the time my daughter was treated, a patient could receive extensive treatment (she had received Chemo and high dose Chemo with stem cell rescue @ Iowa City in addition to shunt placement and the initial resection) at a diffierent facility prior to coming to St. Jude's and the patient did not require a physician referral.  I was fortunate that I had family doing research on this at the time as my daughter would never have been "referred" to St. Jude's, most facilities are not going to send business away willingly.  When we arrived at St. Jude's there was a question of metastatic tumor on the MRI.  I was told by Dr. Merchant at that time that if there were metastatic tumor present my daughter would not be eligible for participation on the RT1 protocol; BUT that she would still be treated by St. Jude's.

2.  St. Jude's does NOT claim to be the only center treating Childhood Cancer; however, there are times when it is the only center offering certain treatments.  When my daughter received Radiation on the RT1 protocol, St. Jude's was the only treatment center in American offering this approach in Radiation Therapy.  Consequently, the RT1 protocol became the next nationwide Radiation Study for Children under the age of 6.  Additionally, St. Jude's shares all of their research results with organizations nationwide.  The research being done today at St. Jude's will have a direct benefit to children treated all across the world because St. Jude's goal is not to be the only treatment center for childhood Cancer, it is that "No child shall die in the dawn of life" and they strive for the eventual cure of all catastrophic childhood illnesses (They treat other childhood illnesses as well).  Of additional note is the fact that I had requested that Endocrine see my daughter prior to the start of Radiation while at Iowa City and I was told that this was not necessary despite the fact that the RT1 study was showing 50% of kids starting Radiation were Growth Hormone Deficient BEFORE Radiation.  Because Endocrine testing prior to the start of treatment was a condition of the RT1 protocol at St. Jude's we found out that my daughter was in complete Adrenal Failure from the use of Megace!  Had Radiation been started prior to addressing this we could have had devastating consequences.  I have personally witnessed St. Jude's refer a patient out to another hospital when a patient could benefit from a treatment that is available there.  Another patient who arrived at St. Jude's the same day as us (who incidentally was 21 years old) was eventually referred out to Duke University for Chemotherapy due to a study they had going at that time. 

3.  We can analyze figures all day; but, I seriously doubt that any parent who has experienced life at St. Jude's would have any question of what St. Jude's does with their money or of how greatly the staff of St. Jude's cares for these children!  I have witnessed it first hand!  The staff love the kids of St. Jude's and truly will walk every step of the journey with the patient and family.  It is a very comforting feeling being cared for by people who truly care so much for your child.  My daughter loves St. Jude's and despite everything absolutely loves going back for her follow up visits.  She counts the days until her visit.  Despite all of the patients at St. Jude's, there are many staff (from admitting to registration to nurses) who remember and recognize us as soon as we arrive even 9 years later.

Please understand I am not putting any other organization down.  We received wonderful care at Iowa City (with the exception of the Endrocrine issue) and as a matter of fact credit Dr. Menezes and his staff with saving her life in the first place.  She has continued to follow with doctors at Iowa City throughout the years.  I just wanted to let people know what our experience was and to encourage people out there to please not just rely on what any of us are saying; but, to go directly to the source.  Also, Childhood Cancer is not about the facilities, it is about the kids.  I love St. Jude's; but, also love and support Iowa City, the Children's Heart Connection and am thankful for every organization out there that is every day supporting Childhood Cancer patients and their families and fighting diligently against Childhood Cancer.  We all have our opinions; but, let us remember they are just that opinions often based in our own experiences and prejudices and not always based in fact.  Please be sure that you check the facts before accepting anything as you walk this unwanted journey.  NOTE:  I erred when I posted this it should have been posted in response to the critical St. Jude's post.  Oops:-)

 

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