hospital budget cuts could end independent living

by Brix Fowler from NBC 33 TV:
Kathy Edmonston's 30-year old son Zachry has Down syndrome. To help take care of him, she's getting assistance from both the federal and state governments. That has allowed Zach to live relatively independently. This means having an apartment and holding down two jobs. He even has time for a girlfriend.
"We've been able to, sort of, demonstrate independence and give him that opportunity to be that independent individual that he is. So, it's been a real success story," says Kathy Edmonston.
That success, however, is in danger for those living in Louisiana with similar situations due to a more than $850 million reduction in federal Medicaid assistance. This has meant laying off workers, streamlining services and closing down healthcare facilities.
"She's back on grade level with the rest of the kids her age, "Roselyn Davis, said. "When you think of a three to four year deficit, to be able to make that up inside of a year and a half, I think it's awesome.”
One of the hospitals closing is Southeast Medical Center. Davis' 16-year old daughter, Kayla, has been going there for more than a year and a half to treat her bipolar disorder. But with Southeast set to shut its doors at the end of the year to save Louisiana around $1.5 million. She’s afraid this decision will put her daughter's life is in danger.
"One of my greatest fears has been that one time that she's successful. That time when she doesn't wake up," says Davis.
On top of the massive reduction in federal Medicaid assistance more than $150 million is set to be slashed from the LSU Hospitals' budget. That means more than 1500 positions are set to be cut, including more than 340 at Earl k. Long hospital in Baton Rouge.
"When you change the system all at once in four weeks or six weeks that's quite draconian," Dr. Paul Perkowski, a Baton Rouge-based physician, explained.
Dr. Perkowski says the cuts are having an effect on more than just the care patients are receiving. It's also causing a brain-drain that could cause future doctors to leave the state and not come back.
"Those medical students and residents in training now no longer have a hospital to practice their craft, to train in their craft," Dr. Perkowski continued. "So, if those residents leave for other opportunities because their hospital is closing or experiencing budget trauma, then those residents are unlikely to practice medicine in Louisiana."
Roselyn hopes that doesn't happen. For now, she and Kayla are doing the best they can with seemingly ever-decreasing resources.
"Today is a little bit better than yesterday. It's a day by day process. Sometimes it's hour by hour. We don't make a lot of plans," she said. "We just take it as it goes."
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AHS reverses funding cut to Down syndrome clinic

from CBC News:

Alberta Health Services has reversed a decision that families believed would have closed a Down syndrome clinic at the Stollery Children's Hospital.

AHS planned to stop funding a nurse coordinator who provided care and arranged treatment for 180 children in Edmonton and northern Alberta.

On Thursday, AHS released a statement saying the position will be maintained.

"Care provided at the clinic will not change, and we are committed to ensuring community supports continue," the statement said, adding: "AHS is sorry for the distress this has caused for the families."

Shelley Wywal, whose five-year-old daughter Elora has Down syndrome, said she was excited and relieved about the decision.

"But also a little bit cautious, because our level of trust that this clinic will carry on as it has has kinda been broken," she said.

"We're concerned with what's going to happen with funding in the future and how as parents we can be assured that we don't need to be afraid."

Andrea Roberts Helps Orphans With Down Syndrome Find Homes

By Alicia Dennis and Christina Tapper from People:

Andrea Faris Roberts figured her new son, born in 2002, got his almond-shaped eyes from her husband, Rich.

But when doctors confirmed that Reece had Down syndrome, "I couldn't stop crying," says Andrea, whose prenatal tests were normal. "I thought, 'What's tomorrow going to be like?' "

The answer: Reece has not only enriched his parents' lives but inspired his mom to save kids with Down syndrome around the world. Researching her son's condition, Andrea learned that in many countries, babies born with the disorder are often abandoned and left in orphanages.

Launching Reece's Rainbow in 2004, the former account manager wrote grant applications and networked with adoption agencies, ultimately dispersing over $4 million to fund adoptions of more than 850 children from Russia, China, Mexico and elsewhere.

Parents like John and Charissa Urban of Owasso, Okla., wouldn't know the love of Ava, now 8, adopted from Ukraine in 2008 without the help of Reece's Rainbow. They turned to the organization to help with funds to bring home little Ava – who weighed only 19 lbs. and was unable to roll over at age 3.

Though she initially had to use a walker to get around, Ava is now running, jumping and playing with her six siblings, including two who are adopted also (one of whom also has Down syndrome). "She's the center of our family," Charissa says. "We're so grateful."

Andrea says that families are being built every day.

"What is wonderful about Reece's Rainbow, is that families can go and see children's photos on the website and know that money is being raised to help with the adoption costs," says Andrea. "They see that it is a better possibility for them to be able to afford to adopt without the years of painful heartbreak in waiting to try to raise funds."

Today, 10-year-old Reece is in the 5th grade and loves playing basketball with his little brother, Owen, 7, in the family's yard in Gaithersburg, Maryland. He's also challenging his father at golf.

"He's got a better golf game than my husband any day of the week," laughs Andrea, 40. "He's got a wonderful swing."

Andrea insists that children with Down syndrome in institutions around the world are not forgotten and would be adopted if more families could afford the typical $25,000 fee (which includes home study costs, travel and adoption expenses).

"After six and a half years, all I can say to the world is, 'I told you so. I told you these kids were wanted,' " says Andrea. "Today, 850 children are not hidden away in institutions anymore. We have new connections every single day."

She adds: "If we had a full grant for every child on our website, we would have no children on our website. The cost is what is hard for people but every life is worth it. If we had more sponsors who could write a check for each of these kids and they would all have families. All of them."

And the proud mother says that her son Reece continues to be an inspiration.

"Reece," she says, "has helped so many families begin."

Extra chromosome 21 removed from Down syndrome cell line

By Leila Gray from UW Health Sciences/UW Medicine:

University of Washington scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down syndrome, a condition in which the body’s cells contain three copies of chromosome 21 rather than the usual pair.A triplicate of any chromosome is a serious genetic abnormality called a trisomy. Trisomies account for almost one-quarter of pregnancy loss from spontaneous miscarriages, according to the research team. Besides Down syndrome (trisomy 21), some other human trisomies are extra Y or X chromosomes, and Edwards syndrome (trisomy 18) and Patau syndrome (trisomy 13), both of which have extremely high newborn fatality rates.
In their report appearing in the Nov. 2 edition of Cell Stem Cell, a team led by Dr. Li B. Li of the UW Department of Medicine described how they corrected trisomy 21 in human cell lines they grew in the lab.  The senior scientists on the project were gene therapy researchers Dr. David W. Russell, professor of medicine and biochemistry, and Dr. Thalia Papayannopoulou, professor of medicine.
The targeted removal of a human trisomy, they noted, could have both clinical and research applications.
In live births, Down syndrome is the most frequent trisomy. The condition has characteristic eye, facial and hand features, and can cause many medical problems, including heart defects, impaired intellect, premature aging and dementia, and certain forms of leukemia, a type of blood cancer.
“We are certainly not proposing that the method we describe would lead to a treatment for Down syndrome,” Russell said.  “What we are looking at is the possibility that medical scientists could create cell therapies for some of the blood-forming disorders that accompany Down syndrome.”
For example, he said, someday Down syndrome leukemia patients might have stem cells derived their own cells, and have the trisomy corrected in these lab-cultured cells.  They could then receive a transplant of their own stem cells – minus the extra chromosome – or healthy blood cells created from their fixed stem cells and that therefore don’t promote leukemia, as part of their cancer care.
He added that the ability to generate stem cells with and without trisomy 21 from the same person could lead to better understanding of how problems tied to Down syndrome originate.  The cell lines would be genetically identical, except for the extra chromosome. Researcher could contrast, for example how the two cell lines formed brain nerve cells, to learn the effects of trisomy 21 on neuron development, which might offer insights into the lifelong cognitive impairments and adulthood mental decline of Down syndrome. Similar comparative approaches could seek the underpinnings of untimely aging or defective heart tissue in this genetic condition.
The formation of trisomies is also a problem in regenerative medicine research using stem cells. Russell and his team observed that their approach could also be used to revert the unwanted trisomies that often arise in creating stem cell cultures.
Figuring out the exact techniques for removing the extra chromosome was tricky, Russell said, but his colleague Li worked hard to solve several challenges during his first attempts at deriving the engineered cell lines.
“Dr. Li’s achievement was a tour de force,” Russell said.
The researchers used an adeno-associated virus as a vehicle to deliver a foreign gene called TKNEO into a particular spot on chromosome 21, precisely within a gene called APP, which sits on the long arm of the chromosome.  The TKNEO transgene was chosen because of its predicted response to positive and negative selection in specific laboratory growth mediums.  When grown in conditions that selected against TKNEO, the most common reason for cells to survive was the spontaneous loss of the chromosome 21 harboring the transferred gene. Other survival tactics were point mutations, which are single, tiny alterations in DNA base pairs; gene silencing, which meant TKNEO was “turned off” by the cell; or deletion of the TKNEO.
Russell explained a key advantage of this technique for getting rid of the entire extra chromosome: Once it was gone, nothing was left behind.
“Gene therapy researchers have to be careful that their approaches do not cause gene toxicity,” he said. This means, for example, that removal of a chromosome must not break or rearrange the remaining genetic code. This method shouldn’t do that.”
Other researchers on this study were Kai-Hsin Chang, Pei-Rong Wang and Roli K. Hirata. The project was supported by grants from Horizon Discovery and from the National Institutes of Health (DK55759, HL53750,GM086497, DK077864, and HL46557.)  The researchers declared no financial conflicts of interest.

Primer: How Will The Election Change Medicaid?

By: Phil Galewitz and Kaiser Health News

The future of Medicaid -- the state-federal workhorse of the nation's health system that provides health coverage to the poorest and sickest Americans -- hangs in the balance on Election Day.
President Barack Obama and Republican nominee Mitt Romney have vastly different approaches to the program. Medicaid is the backbone of the 2010 health law -- considered Obama's signature legislative achievement -- which, starting in 2014, expands coverage to 30 million uninsured Americans. As many as 17 million of those newly insured citizens will be on Medicaid. Romney would turn over much control of the program to states and give them new powers to tailor benefits and eligibility to their own budget needs. Romney says such a move would begin saving $100 billion per year by 2016.
The following list of "frequently asked questions" provides more details on the presidential candidates' plans for Medicaid.
Tune in to the PBS NewsHour on Monday evening for Hari Sreenivasan's full report on the role Medicaid plays in the U.S. health care system -- especially for seniors living in nursing care facilities -- and how the proposals outlined by the candidates could impact the program.
What is Medicaid?
Created in 1965, Medicaid is jointly financed by the federal government and the states. States administer the program but the federal government sets minimum income and eligibility thresholds, targeting low-income children and their parents, the elderly and people with disabilities. It also sets minimum benefits that state Medicaid plans must provide. States can build on these requirements and, as a result, eligibility rules vary widely. The program now covers about 60 million Americans, of which about half are children. Medicaid pays for nearly two-thirds of nursing home residents and about 40 percent of births.
Medicaid is an open-ended entitlement program in which the federal government matches state spending on health insurance. Match rates range from 50 percent to 73 percent, depending on a state's per capita income, with poorer states receiving higher rates. The average federal match is 57 percent.
How does President Obama's health care reform law change Medicaid?
The 2010 law eliminates varying eligibility rules and, starting in 2014, provides Medicaid coverage to everyone with incomes less than 133 percent of the federal poverty level, which today is nearly $31,000 for a family of three.
This expansion could add as many as 17 million people to Medicaid over the next decade if all states adopt the change. Most of the newly eligible would be adults without children who currently are not covered in most states.
The Supreme Court ruling which upheld the health care reform law made this expansion optional for states. Several Republican governors have already said they would not take the extra federal money to expand the program.
Under the law, the federal government pays the full cost for those newly eligible for Medicaid from 2014 to 2016, then states have to begin to contribute to the cost but no more than 10 percent by 2020. States will receive their current federal funding match rate for people currently eligible.