Sparks Tribune - Child caught in medical Catch 22

Community unites to help terminally ill boy

By Janine Kearney
Tribune Staff
May 2, 2006

Updated 12-10-2006: Click here or scroll down for the latest

(North valleys area) resident William Albiniano, age 8, loves firetrucks and wants to be a fireman one day. Unfortunately, medical statistics show that the second-grader who attends Sierra Nevada Academy in Stead probably won’t reach his teenage years. William has a terminal condition called MPGN, a condition in which his white blood cells are attacking his internal organs.

THE KID — William Albiniano, 8, needs expensive kidney treatments and medication his family cannot afford without insurance.

"We ran out of his medication two weeks ago," said his mother Lisa Albiniano.

William needs several medications to slow this process and help ease his pain, including an expensive drug normally used on patients who have had an organ transplant. He also needs to travel to UC Davis in California for treatment each month.

And because the drug he takes is not FDA-approved to treat the MPGN yet, the drug manufacturer can’t give the boy this medicine for free, like it would be able to do for a low-income transplant patient.

William recently was dropped from his insurance, Nevada Check-Up, and parents Lisa and Tony don’t have the money to pay for this life-saving medication or trips for treatment. The couple earns just over the maximum household income to qualify for the program, although the decision is being appealed. The family’s adjusted income was not considered, Lisa said, such as the unpaid time she must take off of work to drive her son to appointments in California, or Tony’s unconventional pay schedule.

"Right now, it comes down to paying the mortgage or getting the medicine," Lisa said.

Fortunately, some community members have stepped up to raise money for the family, such as Dee Castello, owner of Dee’s Used Furniture in Sun Valley.

Last Christmas, Castello crafted and raffled off a gingerbread firehouse to raise money for the family.

Castello is one of several local business owners attempting to raise funds to ease the family’s financial burden of unpaid medical bills and lack of funds for the needed medications.

TRYING TO FILL AN OCEAN WITH AN EYEDROPPER — Barbara Albiniano and Dee Castello, owner of Dee's Used Furniture in Sun Valley, are trying to collect funds for the medical treatments needed by Albiniano's grandson William.

Don't forget the yard sale-style fundraiser this Saturday, Sept. 9, at Dee's Used Furniture. Anyone wishing to contribute items may call (775) 771-4951 or (775) 303-0606. Raffle tickets are now on sale both at Dee's and at the UPS Store at Northtowne (US 395 at North McCarran loop). You may make donations to the William Albiniano Medical Fund at any branch of Wells Fargo Bank. (EDITOR'S NOTE: The yard sale item is now ancient history, but I'm leaving it posted to illustrate the depths of desperation to which our citizens are reduced in an intentionally dysfunctional health care system driven by cash rather than compassion.)

"Dee is a wonderful person and I want to thank her, along with all of the local businesses that are trying to help," Lisa said. "And I want to say thankyou to my mother and sister for helping us."

The Reno Fire Department has brightened William’s days by giving him a real firefighters’ outfit, tailored to his size, and Make-A-Wish has also contributed.

Even though medical journals point to the fact that MPGB patients like William might not have many years to live, supportive community members like Castello are fighting to raise money so that he can be more comfortable, be able to play like the other kids, and spend whatever precious time he has left with his family.

William’s mother said his positive attitude has lifted up the spirits of the whole family, including his two sisters in high school.

"He is such a trooper," she said.

"Even when he spends a week in the hospital and is loaded with fluids and is ill, he is still the happiest little guy.

"He has a better state of mind than we do, and it helps us stay stronger.

"Now the most pressing need is funds for his four medications, including one that costs more than $1,100.

"I’m trying to work a full-time job, take care of him and two teenage daughters, pay medical bills and try to keep the power on.

"What do you do? I know how people can become homeless."

Updated list of donation locations

UPDATES

Nevada misses the boat again

Sen. Joe Neal's 2002 universal health care proposal looks visionary in retrospect

DECEMBER 10, 2006 — RAFFLE DRAWING on Dec. 23, 2006, for a 2006 Kawasaki Eliminator 125, $5.00 per ticket courtesy of Kawasaki of Reno, 2315 Market Street, west of US395 between Vassar and Mill streets.

OCTOBER 8, 2006 — Rolling the rock back up the hill all over again

SEPTEMBER 24, 2006 — BARBWIRE: KRNV TV-4's Joe Hart reports a breakthrough
Sept. 28 update: Hope extinguished anew. Damn. More Sunday, 10-1-2006.

SEPTEMBER 10, 2006 — BARBWIRE: State agency still stonewalling; Hart rides again

SEPTEMBER 7, 2006 — Fundraiser to help ailing local boy (Daily Sparks Tribune page 1)

AUGUST 30, 2006 — KRNV TV-4's Joe Hart did a hard-hitting followup report on his August 16 story this evening. (It is now available at KRNV.com. Click on "Special Features" on the left side of the page frame and scroll down to "Hart of the Matter." (You must have a newly updated web browser. Older versions don't work on Channel 4's super-tricked out site. More techie details here.)

Mr. Hart interviewed Nevada Checkup head Charles Duarte. Despite having a complete set of release forms signed by Lisa Albiniano, Duarte refused to discuss why William Albiniano's health insurance is stil lin limbo. Several weeks ago, when the editor of this website (who was likewise cleared by Mrs. Albiniano) talked to Duarte, he said the insurance program was waiting for more paperwork. Mrs. Albiniano said tonight that the only thing more she could possibly provide them is a Xerox of her dog.

Ironically, just two days before Hart's report aired, the nationally-syndicated Dear Abby column published a PR plant over the signature of the head of the Robert Wood Johnson Foundation, which supports Nevada Checkup. The press release talked about all the kids who should apply for this wondrous help. Alas, in Nevada, any insurer, public or private, treats claimants like horse thieves. Dammem.

Nationally published 8-28-2006

DEAR ABBY: Children need more than paper, pencils and a lunch box to be prepared for this school year. They also need health care coverage. Children who have health insurance are better prepared to learn in school and better equipped to succeed in life.

Unfortunately, nearly 3.3 million children in the United States are uninsured. That means one out of every 10 kids might not receive the medical care they need, when they need it.
story continues below

The good news is most uninsured children are eligible for low-cost or free health care coverage through Medicaid or the State Children's Health Insurance Program. These programs exist in every state and the District of Columbia and cover doctor's visits and prescriptions, but many parents may not believe their kids are eligible. Because these parents are working, they may think they earn too much money to qualify.

Anyone who cares about an uninsured child — that includes grandparents, teachers, day care providers, ministers and others — can do his part by telling parents about these programs and urging them to get more information.

Abby, I know you share my concern that these children be allowed to start the school year off right -- with good health and access to health care. Thank you for helping us connect children with the services they need. — RISA LAVIZZO-MOUREY, M.D., PRESIDENT AND CEO, ROBERT WOOD JOHNSON FOUNDATION

DEAR DR. LAVIZZO-MOUREY: You're welcome. I'm pleased to help you spread the word about this important program for low-income families. With children heading back to school, your letter is a timely one.

Readers, the Robert Wood Johnson Foundation sponsors a program nationwide called Covering Kids and Families, and invites parents of uninsured children to call (toll-free) (877) 543-7669 ((877) KIDS-NOW) to find out if your children are eligible. The need is great, so please don't wait to place that call.

Appeared in the Reno Gazette-Journal on 8-28-2006
Copyright © 2006 Universal Press Syndicate

It reminds one of what President Harry Truman said about banks: "The only time they'll lend you money is if you can prove to them that you don't need it."

Somebody should let Dear Abby and Mr. Lavizzo-Mourey know about this. How about a few thousand readers? Let me know what response you get. BARBWIRE

AUGUST 27, 2006 — BARBWIRE: Fundraiser provides breathing room, still no insurance

AUGUST 20, 2006 — BARBWIRE: Sanctuary for the children

At the link, above: The Las Vegas Review-Journal runs a puff piece on the wondrousness of the Nevada Checkup program which dropped William Albiniano and now stonewalls inquiries as to why he cannot be reinstated.

AUGUST 18, 2006 — Fundraiser set for Sun Valley Bar August 19

Versions of the above story appeared in the 8-19-2006
Daily Sparks Tribune and Reno Gazette-Journal.

AUGUST 13, 2006 — KRNV TV-4 story will likely air August 16

UPDATE: You may view Joe Hart's August 16 story on William by going to KRNV.com and clicking on Special Features at the left hand side of the page. Once there, look for the headline entitled "HART OF THE MATTER: Reno Family of Child with Life Threatening Disease Isn't Getting Financial Help...Their son is battling a life threatening illness. They can barely afford his monthly medication and they've now fallen behind on their house payments. To top it all off, they've been rejected by a state program designed to help people in their situation. News 4's Joe Hart focuses on a family that refuses to give up...."

The director of Nevada Checkup refused to be interviewed for Mr. Hart's story. I spoke with him after Lisa Albiniano gave him written permission to do so, as she did for Mr. Hart. Charles Duarte said his office is awaiting (what else?) more paperwork.

Keep in mind that older web browsers will probably not work to get you to the video from the home page. You must also have Microsoft Windows Media Player in your system. It's available for both Windows and MAC and probably other systems at the BillGatesLand website, http://www.microsoft.com — leastways I hope so.

AUGUST 6, 2006 — Fundraiser rescheduled to Sept. 9, 2006

JULY 30, 2006 — William Albiniano ordered to emergency room by doctors

JULY 23, 2006 — Yard sale fundraiser scheduled at Dee's in Sun Valley on August 12. Please help.

JUNE 18, 2006 — Family now two months behind on house payments to pay for medicine. Donations still very, very slow.

MAY 21, 2006 — Donations slow, family cancels UC Davis doctor appointment

MAY 14, 2006 — Family foregoes mortgage payment to buy $1,400 prescription. Donations are slow.

MAY 8, 2006 — A friend has just started a donation account for William at Wells Fargo Bank. Mr. and Mrs. Albiniano have foregone this month's mortgage payment in order to buy $1,400 in medication for their son. Your help will be sincerely appreciated. Let me know what you're doing and I'll help get the word out. Thanks. — Andrew

BARBWIRE May 7, 2006: Against the odds

RENO GAZETTE-JOURNAL 12-25-2004 — William Albiniano dreams of becoming a firefighter

The following local businesses have set out donation jars
or charitable accounts for the family
Updated 12-10-2006

o Dee’s Used Furniture, 5115 Sun Valley Blvd. 673-3312
o Kawasaki of Reno, 2315 Market Street west of US395 between Vassar and Mill streets.
(RAFFLE DRAWING on Dec. 23, 2006, for a 2006 Kawasaki Eliminator 125, $5.00 per ticket)
o Bank of America — account phased out.
o Wells Fargo Bank, William Albiniano Medical Fund, any branch, still active.
o UPS Store, 2875 Northtowne Lane
o Reno Rock & Feed, 7780 North Virginia St.
o Panda House, talk to Shirley, 5055 Sun Valley Blvd.
o Martial Arts Legacy, Spanish Springs, 425-5400
o BiRite Market, 5690 Sun Valley Dr.