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ALD newborn-testing advocates fear veto for cost

Supporters of a bill that would require newborns to be tested for a deadly disease fear it may be headed for a veto because of its cost.

Assemblyman Richard Pan’s AB 1559, requiring newborns to be screened for adrenoleukodystrophy (ALD), is now headed for a Senate floor vote, having been approved last week by the Appropriations Committee on a 5-0 vote. In fact, no lawmaker has voted against the bill so far; the Assembly approved it 79-0 in May.

But the only entity on record as opposing the bill is a big one: The California Department of Finance. Its analysis found adding a new disease to the current screening panel would require raising the $111.70 fee by another $11 – and that means an added $2.75 million per year in cost to Medi-Cal, which covers testing for about half the state’s births.

The Finance Department noted the federal government is reviewing whether ALD should be added to the list of recommended screenings for all newborns, but that review will take about two years and the state typically waits for that final approval before adding new diseases to its screening panel.

Gov. Jerry Brown typically doesn’t comment on bills before they reach his desk.

ALD – spotlighted in the 1992 movie “Lorenzo’s Oil” – is a degenerative brain disease mostly affecting young boys. The disease affects the myelin sheaths that insulate brain cells, essentially preventing the brain from communicating with the body.

It’s a rare disease – estimated at one in 20,000 to one in 50,000 births – and those who have it often have normal early childhoods. Early symptoms often seem to be behavioral and are misdiagnosed, but once the degeneration begins, it’s very rapid and usually leads to a vegetative state and then death. Advocates say cord-blood and bone-marrow transplants in the disease’s earliest stages can treat and even heal patients – if anyone knows the patient has the disease.

“Every year that California delays testing, we can expect that 30 families won’t get the early diagnoses that could save their vibrant and seemingly healthy child from this cruel disease,” said Pan, D-Sacramento, who is a physician. “For the parents who have lost their child to ALD, it is particularly tragic and painful knowing that a simple and effective test at birth could have saved their child’s life.”

Shane Louisell, 53, of San Leandro, lost two brothers to the disease – Bobby, at age 5, and Richard, at age 44 – the latter having suffered the less-common, adult-onset version of the disease. Now his nephew, in his 30s, has it too.

“The bill is so important – getting newborns screened, at least they have a chance to do something about it before it’s too late,” said Louisell, an artist and retired teacher. “It would save a lot of families grief.”

And supporters say the bill actually would save California millions because the difference in treating an early diagnosed patient and a late-diagnosed patient is roughly $1 million per year.

New York just began testing newborn babies for ALD at the end of last year; so far, six boys and one girl were found to have the disease, and so have been given a chance at life; testing of those babies’ families found a four-year-old who also was diagnosed.

You could’ve heard a pin drop as ALD victims’ mothers told their stories at the Senate Health Committee hearing in June:

Posted on Thursday, August 21st, 2014
Under: Assembly, California State Senate, Gov. Jerry Brown, Jerry Brown | No Comments »

Kashkari offers $25k scholarship in ad contest

Gubernatorial candidates often talk about the affordability of higher education, but not quite like this.

NEEL KASHKARIRepublican Neel Kashkari is offering a $25,000 scholarship to the California college student who can create the best 30-second ad for his campaign.

“College students are extremely creative and today my campaign is offering them the opportunity to help change the direction of California,” Kashkari said in a news release Wednesday. “We need to harness the creativity and vision of college students and encourage them to participate in the political process. I’m thrilled to announce this contest to achieve both important goals.”

The deadline to submit a 30-second or shorter ad, which will be used by the campaign potentially online or on broadcast or cable television, is 11:59 p.m. on Wednesday, Sept. 24; the $25,000 scholarship will be awarded to the winning entrant or team. Full rules, including sizing, timing and how to submit an ad, are posted on Kashkari’s website.

“I encourage parents, friends and students to spread the word about this contest,” Kashkari said. “We can change California if we harness the energy and creativity of our students.”

Posted on Wednesday, August 20th, 2014
Under: 2014 general | No Comments »

Blue Shield criticized for Levi’s Stadium skybox

The campaign for a ballot measure to let the state insurance commissioner veto health insurance rate hikes is pointing to Blue Shield of California’s pricey luxury skybox at the new Levis’s Stadium as a sign that insurers’ spending is out of control.

Levi's Stadium luxury suiteConsumer Watchdog and the Yes on 45 campaign sent a letter Tuesday to California Attorney General Kamala Harris urging her to investigate “Blue Shield’s abuse of its non-profit status” and crack down on its spending.

The letter cites a San Francisco Chronicle article which said suites of the type that Blue Shield got at the San Francisco 49ers’ new home are “priced at between $250,000 and $400,000 a year and require a 10- or 20-year commitment. That puts the price at anywhere from $2.5 million to $8 million.”

“We urge you to investigate Blue Shield’s abuse of its non-profit status and use your authority to impose a ‘charitable trust’ on Blue Shield’s assets and block any additional wasteful spending that robs taxpayers and average California patients of their financial health,” Consumer Watchdog President Jamie Court wrote to Harris.

Proposition 45 “will ensure that companies like Blue Shield are not increasing premium charges to patients to fund excessive executive compensation, lavish entertainment and excessive reserves,” Court wrote. “Under current law, the California Department of Insurance does not yet have the authority to block excessive rate increases that funded Blue Shield’s skybox. Before November, only you have the power to protect California taxpayers.”

Neither the No on Prop 45 campaign, known as Californians Against Higher Health Care Costs, nor Blue Shield of California answered e-mails seeking comment Tuesday. Blue Shield spokesman Sean Barry told the Chronicle over the weekend that the luxury box’s primary purpose “is to interact social with some of our larger membership groups,” and it won’t be available to executives for “their personal use.”

Posted on Tuesday, August 19th, 2014
Under: 2014 general, ballot measures | 2 Comments »

CA17: Khanna disavows Ernie Konnyu’s words

Apropos of my “please don’t help me” story in Monday’s editions, Democratic congressional candidate Ro Khanna on Tuesday repudiated the words of one of his most vocal Republican supporters.

Ernie KonnyuGOP former congressman Ernie Konnyu already had complicated Khanna’s life a bit by trying to rally tea party support for his bid to unseat Rep. Mike Honda, D-San Jose. More recently, Konnyu drew unwanted attention by getting into a Facebook argument with Republican former Assemblyman Jim Cunneen – who has endorsed Honda – over the San Jose Silicon Valley Chamber of Commerce PAC’s support of Assembly candidate and Campbell councilman Evan Low. Low has led the fight on lifting the Food and Drug Administration’s ban on blood donation by gay men.

“How sick is it that a business group endorses a liberal so left that he wants to change the law to allow blood donations by gays,” Konnyu wrote on Friday, Aug. 8. “This, even though the current law forbids it since such blood has a risk of transferring the deadly AIDS virus. Yes! Gay pride is worth more with Evan Low than our citizens’ lives.”

Konnyu has accused Honda’s staff and supporters of waging a “war of hate,” using “demonizing tweets” against him for his comments; last Thursday, he tweeted a challenge to Honda to introduce a bill to overturn the FDA policy.

Low and others issued a statement Tuesday urging Khanna to disavow Konnyu’s remarks.

“His continued silence on this issue raises concerns that he may share Konnyu’s views, and I urge him to join me, Congressman Honda, and the thousands of Americans nationwide who would like to see the FDA change its views,” Low wrote.

James Gonzales, president of the Bay Area Municipal Elections Committee – a Silicon Valley LGBT political group – said “this kind of homophobic rhetoric has no place in our politics, from any politician of any party. We hope that Ro Khanna will quickly condemn these comments by Konnyu and denounce his support.”

Khanna issued a statement later Tuesday saying his positions and record “on defending marriage equality and the rights for all people is unequivocal.

Ro Khanna“I believe that any laws discriminating against LGBT individuals are unconstitutional. Full stop. While I am proud of all the support this campaign has received, I find any discriminatory statements from my supporters – whether they be homophobic, racist, or sexist – to be completely unacceptable and not reflective of my or my campaign,” he said.

Khanna said he has always respected Low’s public service, but Low now “has marginalized what could have been legitimate advocacy by recklessly saying that I could possibly agree with discrimination. This striking example of hypocrisy represents the worst of politics.”

Honda and Low remained silent when a union-backed national super PAC sent out a mailer just before June’s primary election that said Khanna’s policies would send jobs overseas and “outsource our jobs,” Khanna noted – a mailer Khanna calls “racially coded and xenophobic.”

“Unlike Congressman Honda, I will always speak up when those who support me use language that is not in line with my values,” Khanna said.

The FDA’s policy dates back to 1983 and has been in place in its current form since 1992 but is opposed by the American Medical Association and the American Red Cross, which say the current lifetime deferral for men who have had sex with other men is medically and scientifically unwarranted. Honda in 2008 supported San Jose State University’s effort to bring attention to the issue by suspending campus blood drives; started a petition against the ban last year that has been signed by more than 51,000 people; and has joined with several dozen other members of Congress in urging the FDA to lift the ban.

Posted on Tuesday, August 19th, 2014
Under: Mike Honda, U.S. House | 4 Comments »

Eric Swalwell gets second bill signed into law

President Obama’s signature this month of a second bill by Rep. Eric Swalwell – naming a Dublin post office for a late veteran and community activist – means the East Bay congressman now has had more bills enacted than the 69 other House freshmen.

That’s right, folks: Two bills signed into law is the best any freshman has done in this 113th Congress.

Eric SwalwellSwalwell’s H.R. 1671 renames the post office at 6937 Village Parkway in Dublin for Dr. Jim Kohnen, who died in May 2012 at age 69. The U.S. Postal Service will schedule a formal naming ceremony.

Kohnen retired from the U.S. Army Reserve as a colonel after over 30 years of service in the Corps of Engineers; during his service, he had graduated from the U.S. Army War College, the Air War College, and the Industrial College of the Armed Forces, earning his doctorate in education. Later in life, he was a teacher at San Leandro High School, an elected or appointed official on five local boards, and a volunteer with organizations including the Boy Scouts and the Dublin Historical Preservation Association.

“Through this Post Office, Jim will always continue to be part of his beloved community,” Swalwell, D-Dublin, said in a news release Monday.

Swalwell’s earlier successful bill was H.R. 3771, which President Obama signed into law in March. That one encouraged Americans to donate to Typhoon Haiyan relief efforts by letting them deduct contributions to Philippines recovery efforts made before April 14 from their 2013 taxes; otherwise, a person would have had to wait until he or she filed their taxes next year to claim the deduction.

Posted on Monday, August 18th, 2014
Under: Eric Swalwell, U.S. House | 2 Comments »

Lawmakers OK bill to boost grease-theft penalties

A bill to boost penalties for stealing used cooking oil is on its way to Gov. Jerry Brown’s desk.

Yes, you read that correctly – used cooking oil. Apparently oil from restaurants’ deep fryers has become a hot commodity worth a lot of money, with thieves draining it in the dead of night and selling it for conversion into clean-burning biofuel. Ah, California.

There's gold in that there fryer“As the alternative fuels market keeps growing, the demand for inedible kitchen grease based biofuels will grow as well,” Assemblyman Chris Holden, D-Pasadena, the bill’s author, said in a news release.

“The price increases stemming from this new demand will make grease theft a more lucrative crime in the coming years,” he said. “AB 1566 provides law enforcement with the tools to combat grease theft and protect the burgeoning biofuels market by beefing up requirements for licensed haulers, increasing the penalties for stealing grease and allowing law enforcement to impound vehicles for up to 15 days.”

The penalties have been so minor that many law enforcement agencies don’t even respond when owners report the theft, Holden contends. But according to the California Department of Food and Agriculture, a typical fast-food restaurant produces 150-250 pounds of grease a week and a fully loaded pumper truck could bring in as much as $900 at a recycling center.

The Assembly voted 70-0 Monday to send the bill to Brown’s desk. The state Senate had approved it 35-0 one week ago.

Posted on Monday, August 18th, 2014
Under: Assembly, California State Senate | No Comments »

Supporters rally for ‘gun restraining order’ bill

Advocates of a bill that would create a “gun violence restraining order” system are stepping up their efforts in advance of a state Senate floor vote later this month.

Assemblywoman Nancy Skinner, D-Berkeley, along with several Bay Area police chiefs and gun control advocates, rallied Monday morning outside the Emeryville Police Department in support of AB 1014. Skinner and Santa Barbara Democrats Assemblyman Das Williams and state Sen. Hannah-Beth Jackson announced the bill soon after a May rampage at UC-Santa Barbara left six students dead.

“When someone is in crisis, the people closest to them are often the first to spot the warning signs, but almost nothing can now be done to get guns out of the hands of someone in crisis,” Skinner said in a news release Monday. “Parents, like the mother who tried to intervene, deserve an effective tool to help prevent these tragedies.”

Modeled on domestic violence laws, AB 1014 creates a process to intervene and potentially prohibit the purchase of firearms and/or remove firearms already in possession by a person who shows warning signs of a risk of violence. Law enforcement or family members would have the right to ask a judge to grant an order prohibiting firearms purchase or possession. Connecticut, Indiana and Texas have similar laws, Skinner’s office said.

Current law lets that process start only when therapists notify police that a client is at risk of committing a violent act. Family members can call police, but if no crime has been committed, or the individual doesn’t meet criteria for an involuntary civil commitment to mental health treatment, there isn’t anything police can do about that person’s firearms.

“AB 1014 fills an important gap in the law that prevents law enforcement from acting to prevent violence before it happens,” Emeryville Police Chief Ken James, a longtime gun-control advocate, said in Skinner’s news release. “This need has been obvious to law enforcement for years. But the time to act is now. The tragedy in Santa Barbara makes that obvious.”

The Senate Public Safety Committee approved the bill on a 5-2 vote June 24, and the Senate Appropriations Committee approved it Friday on a 5-0 vote with two Republicans not voting.

Posted on Monday, August 18th, 2014
Under: Assembly, California State Senate, gun control, Nancy Skinner | 9 Comments »

CA17: Khanna issues Honda ice-bucket challenge

As ugly as the 17th Congressional District battle is getting, at least there’s still a little humor and perhaps some charitable good.

Democratic candidate Ro Khanna on Saturday issued the now-ubiquitous challenge – to either donate $100 to combat amyotrophic lateral sclerosis, or make a video of dumping a bucket of ice water over one’s own head – to Rep. Mike Honda, D-San Jose.

Anyone want to lay bets on whether Honda makes the donation or takes the dousing – or both?

Posted on Saturday, August 16th, 2014
Under: 2014 general, Mike Honda, U.S. House | 2 Comments »

Commerce Secretary attends Oakland forum

U.S. Commerce Secretary Penny Pritzker joined Rep. Barbara Lee and other officials Monday for a regional economic development forum at Oakland International Airport, focused on creating more jobs and growing businesses in the East Bay.

Penny Pritzker“The Department of Commerce has tremendous resources in place in this region and around the country that allow us to partner with your businesses and entrepreneurs so they can compete and succeed,” Pritzker said in a news release issued by Lee, D-Oakland, after the event.

“Here in the Bay Area, we are working with companies large and small to sell their goods and services to the 95 percent of global consumers who live outside the U.S., helping to create the conditions for innovators and entrepreneurs to thrive, and supporting minority-and women-owned businesses through our Minority Business Development Agency,” she said, adding her department “is committed to helping your companies grow and thrive so they can create jobs – that is our mission and a core objective for President Obama.”

Lee said small businesses “are fundamental to the East Bay’s economic growth, especially women and minority-owned businesses.

“These businesses create jobs, contribute to our community and create opportunities into the middle class,” she said. “In order to ensure continued economic growth, we need to investment in sharing the available resources with these businesses and businesses owners to help them succeed.”

Other attendees included regional Small Business Administration Administrator Donna Davis; Minority Business Development Agency Director Alejandra Castillo; Overseas Private Investment Corp. Director of Corporate Development Alison Germak; Port of Oakland Aviation Director Deborah Ale Flint; Alameda County Supervisor Keith Carson; and Oakland Mayor Jean Quan.

Earlier Monday, Lee had hosted a roundtable discussion with Pritzker and East Bay business leaders to discuss economic development, supplier diversity and the importance of gender and ethnic diversity in corporate leadership.

Posted on Tuesday, August 12th, 2014
Under: Alameda County, Alameda County Board of Supervisors, Barbara Lee, economy, Jean Quan, Oakland, U.S. House | No Comments »

Pols mourn Robin Williams

Politicians joined in the nation’s grief over the death of actor and comedian Robin Williams, who was found dead in his Tiburon home Monday at age 63.

From President Barack Obama:

“Robin Williams was an airman, a doctor, a genie, a nanny, a president, a professor, a bangarang Peter Pan, and everything in between. But he was one of a kind. He arrived in our lives as an alien – but he ended up touching every element of the human spirit. He made us laugh. He made us cry. He gave his immeasurable talent freely and generously to those who needed it most – from our troops stationed abroad to the marginalized on our own streets. The Obama family offers our condolences to Robin’s family, his friends, and everyone who found their voice and their verse thanks to Robin Williams.”

From U.S. Sen. Barbara Boxer, D-Calif.:

“I send the heartfelt condolences of my entire family to Robin Williams’ family as our entire country mourns the loss of this remarkable genius who made us smile, laugh uncontrollably or cry.

“His ability to connect with everyone was a rare gift indeed. We will always remember Robin and we must also rededicate ourselves to helping each other through the dark times.”

From House Minority Leader Nancy Pelosi, D-San Francisco:

“Today, the world has lost a great genius and San Francisco has lost a loyal friend. The news of Robin Williams’ passing brought deep sadness to a universe that he had filled with laughter. Robin Williams was a brilliant comedian – one of the funniest of them all because he was one of the most brilliant of them all. The spontaneity of his humor always took us by surprise; the seriousness of his acting did not. I hope it is a comfort to his family that the world mourns their loss and are praying for them at this time.”

From San Francisco Mayor Ed Lee:

“San Francisco mourns the profound loss of Robin Williams who inspired us with his comedy and art. His legacy has had a deep and inspiring impact on our City and on our residents.

“His ties to San Francisco were deep, having found early success in our City’s comedy clubs with his popular stand-up routines and where he was destined to launch a successful career that included starring roles in classic television shows and big screen success including an Academy Award.

“Despite his success, he has never forgotten San Francisco. He was a philanthropist who gave generously, and he was a friend of the City.

“San Francisco is heartbroken by the tragic loss of Robin Williams who forever changed the world with laughter and joy. Our thoughts and prayers are with his family and friends at this time of mourning.”

For my own part, I’ll just offer this clip – one of my favorite scenes from one of my favorite movies, “The Fisher King,” for which Williams was nominated for an Oscar. He doesn’t say a word in this scene. He didn’t need to.

Posted on Tuesday, August 12th, 2014
Under: Barbara Boxer, Nancy Pelosi, U.S. House, U.S. Senate | No Comments »