Tag Archives: Croatia

Nora Šitum: Coming to America

6 Feb

A five year-old Croatian girl, Nora Šitum, is suffering from acute lymphoblastic leukemia and needs immediate treatment. Although the economic situation in Croatia is in crisis – the country’s debt was just lowered to junk status last week – within just a few days, the family had raised the $590,000 for Nora’s treatment at the Children’s Hospital of Philadelphia. She is front-page news in Croatia, and the story is proving to be something of a PR headache for a Philadelphia hospital and the American Embassy in Zagreb. Her story made the front page of social media site Reddit Wednesday morning (but was later removed due to an editorialized title). 

After all that money had been raised so quickly, Croatian media reported yesterday that the Hospital had informed Nora’s family that the charge would actually be just over $834,000. That’s aside from the fact that her family and caregivers have been working feverishly to work through the complicated Croatian and American bureaucracies involved with transporting a little girl from a non-visa-waiver country to the US for medical treatment. The process to obtain such a visa is more difficult than just getting a tourist visa – you also need to establish that travel to the US is necessary because the proposed treatment is unavailable in Croatia, and the applicant must be seen by an Embassy physician. You also need to prove that you have an appointment and the financial means to pay the bill. 

Obviously, the United States Embassy in Croatia and the Children’s Hospital of Philadelphia are unable to comment about specific ongoing cases, but I did manage to speak with people close to the situation who agreed to discuss the case on condition of anonymity. 

Under the Croatian national health care scheme, people are able to apply for payment of medical treatment undertaken abroad, and 75% of such requests are approved on an average year. However, the stem cell treatment that Nora is scheduled to undergo in Philadelphia is classified as “experimental”, and as such, the government health care plan will not cover any of it – the family has to come up with cash. 

The Šitum family has been in close touch with the US Embassy’s consular staff, and visas for Nora and her family were expected to be issued Wednesday afternoon. The Embassy has been in close touch with both the hospital and the Croatian Ministry of Health to coordinate the issuance of visas and doing “whatever it takes” to ensure that Nora and her family can travel to the US for these treatments. 

While it is true that the hospital quoted $590,000 as the cost of the experimental leukemia treatment that Nora is expected receive in Philadelphia,  it is also true that an additional $270,000 is to be paid over the course of a two year follow-up treatment. The Croatian government indicated that it would waive collection of the value added tax on any monies donated for Nora’s treatment, and the Mayor of Zagreb promised that the city would pay the difference into the accounts collecting funds for Nora’s treatment.  At a press conference Wednesday, Nora’s mother announced that they had collected in excess of the entire amount the hospital in Philadelphia had quoted to them

The treatment Nora is expected to receive is truly revolutionary – it involves injecting a harmless mutation of HIV into the child’s system, tricking her immune system into fighting the cancer.

To perform the treatment, doctors remove millions of the patient’s T-cells — a type of white blood cell — and insert new genes that enable the T-cells to kill cancer cells. The technique employs a disabled form of H.I.V. because it is very good at carrying genetic material into T-cells. The new genes program the T-cells to attack B-cells, a normal part of the immune system that turn malignant in leukemia.

The altered T-cells — called chimeric antigen receptor cells — are then dripped back into the patient’s veins, and if all goes well they multiply and start destroying the cancer.

The T-cells home in on a protein called CD-19 that is found on the surface of most B-cells, whether they are healthy or malignant.

Nora’s father wrote a message thanking supporters and people who had so quickly donated money for Nora’s treatment, adding,  

Thank God we live in Croatia – a country with a “junk” credit rating – and sent a message around the world.Maybe we are small and poor, and perhaps we don’t have the same living standards as the West, but for our children, we will empty our pockets of every last penny, because we have a heart and soul bigger than Switzerland’s credit rating. 

UPDATE: The Children’s Hospital of Philadelphia issued the following statement: 

CHOP treats thousands of children each year, from throughout the region, the country and the world and cares about the health of all children. We know how invested the family, friends, and the community at large is in ensuring CHOP provides the best possible care for all of its patients.

While patient privacy prohibits us from commenting specifically on any individual’s medical condition without consent, we want the public to understand the pricing protocols we follow for all international families.

How the International Medicine Process Works:

·       CHOP’s process estimates the costs of treatment in advance and seeks payment at the time treatment begins.  Additional follow-up clinical treatments are sometimes necessary and can be administered over several years, either at CHOP or back in the patient’s home country.  CHOP does not charge for this follow-up clinical treatment at the time of initial treatment.  If the child is not further treated at CHOP, CHOP will never charge for the follow-up treatment.  However, CHOP does explain those potential costs to patient families at the outset so they understand the financial issues they may be facing.  

·       We try to ensure that all international families understand the difference between the initial costs of treatment charged by CHOP, which does not change, and the potential future costs which will depend on future clinical treatments.

Foreign contributions can be made on Nora’s behalf using the following information: Udruga Hrabro dijete (Brave Child Association)  OIB 58243364080 and through the Zagrebačka Banka at IBAN: HR0423600001102209843 SWIFT CODE: ZABAHR2X

 

Begich

23 Nov

Croatian media are all excited, as the first US Senator of Croatian heritage is elected. Of course, it was a closely-watched, suspenseful campaign for us, too.

Dubrovnik: If you’re wet, no cab for you

10 Dec

They made the city look amazing. Not that that’s such a difficult feat.

The remaining teams on the Amazing Race had to make it from Vilnius, Lithuania to Dubrovnik, Croatia. The teams on the earlier flight through Prague missed their connection and had to improvise through Zagreb or Vienna. Azaria & Hendekea inadvertently purchased business class tickets on LOT Polish Airlines – a no-no – and had to rush back only to find that they were too late, and had to re-book on a later flight through Frankfurt.

Hint to future teams: travel agency is almost always > directly through the carrier. More carriers > one carrier. Also, I think teams that make a quick run into a hotel on the way to make some phone calls or chat up the concierge are pretty smart. Why wait for 3 hours at the airport in the middle of the night for the ticket office to open when you can get your flight lined up before you get there? Ron & Christina, the father/daughter duo did that.

The teams that did make it on the flight through Warsaw made it to Dubrovnik first, and the roadblock involved matching up stones of the old city wall with the correct empty spot. A stonemason was there to judge whether they had a proper match. None of the teams seemed to have an excessive problem completing that task.

From there, teams made their way to a fort a ways up a hill, from where they had to take a tandem zipline across a small harbor to another part of the city walls. Next up was the detour:

Short & Long, Teams must rappel down from the roof of the fort to the base and follow the marked path to a city wall that they had to climb with a rope ladder. Then, once at the top, they had to make their way through Dubrovnik’s Old Town to a plaza where they would find their next clue. The hard physical part of the task was short, but then Teams must navigate a long distance through the confusing streets to the plaza. In Long & Short, Teams must use a tandem zip-line to fly from the fort to the water below. Then, after swimming to a floating platform, they must choose a small fishing boat, row around the city walls to the old harbor, and run to the same plaza, where they would find their next clue. The hard physical part of this task was much longer, but the short distance to the plaza was far less confusing.

Kynt & Vyxsin, the improbably named goth duo, opted for short & long, scaling the city walls, which may have been quicker, but anyone with even mild vertigo would have balked at that. Nathan & Jennifer, who have pretty rapidly replaced the blondes as the team I dislike most, bickered and spewed hatred at each other while trying to figure out how to row a boat. “I hate you with a passion” is not a great way to motivate your teammate when you’re trying to figure out how to row a rowboat. Even the competing control freaks, Ron & Christina, had some trouble with the rowing. Christina insisted that her dad row the boat facing front, when her father knew better and eventually turned himself around and rowed properly.

Ron & Christina and Nathan & Jennifer reached the cluebox almost simultaneously. Now, they needed to find a taxi to take them to the top of Srd, the mountain overlooking the city, where the pitstop for this leg was located. Ron & Christina found a cab almost immediately. Nathan & Jennifer, however, had actually found a cab before Ron & Christina, but the cabbie refused to take them because they were still wet from the boating task.

Jennifer became distraught at this, and started quite literally freaking out. Nate tried to calm her down, suggesting that not finding a taxi within 5 minutes isn’t the end of the world. He said, “it’s ok”. She replied, “It’s not ok! Our relationship sucks!” Whoops. Bit of a non-sequitur there.

So, unable to find a cab, they hitched a ride with the friendly driver of a Renault Clio. He took them to the top of Srd, where they were labeled “the second team to arrive”, but not “team number two”. Because the clue explicitly instructed them to take a cab, they had to return to the cab stand and take a cab back up the mountain. Phil recommended to them that they “make haste”. They did not seem pleased.

In the meantime, Kynt & Vyxsin made it in as team number two, and Nate & Jennifer made it in as team number three.

Azaria & Hendekea never were able to catch up following their mistakes back in Vilnius, and were the last team to arrive.

I’ll note that it’s interesting that there hasn’t been a non-elimination round, or an extended leg yet this race. To watch Phil’s video of his time in Dubrovnik, click here.