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Today is Rare Disease in the Capitol, an advocacy day around costly drug development for, well, rare diseases. At the federal level, programs to stimulate therapies or cures under the "orphan drug" program for diseases that affect fewer than 200,000 people, making cost recovery of the development and marketing unlikely or impossible.
Back in 1990-91, I worked for the Cystic Fibrosis Foundation. That's after I dropped out of high school as a sickly kid but knew the CF Foundation because I spent much time growing up with kids with CF at Children's Hospital of Orange County (CHOC). We were the respiratory kids, so we were grouped together. I moved over to work at around 1991 and worked there for more flexible hours while going to Orange Coast until I transferred to Davis in 1994.
During those days, the average age of death of CF kids was 13, so I went through formative years of my life losing friends. Out of around a dozen, only one is still alive. I met her in Denver at National Jewish Center for Immunology and Respiratory Medicine in Denver in 1989. She lives at age 48 in St. Louis after double lung and kidney transplants.
Modern medicine wasn't enough to save most of my friends lives, but it saved Donalyn's. To this day I carry a passion for the work of the researchers, doctors, nurses, fundraisers, and so many more who made it happen.
I'm looking forward to the March 15 theatrical release of "Five Feet Apart" and just started reading the book of the same name last night. When I worked at the CF Foundation, we had event with young celebrities (let's hear it for Punky) and the CF kids.
However, the antibiotic-resistant pseudomonas bacteria started spreading across their vulnerable lungs. CF camp ended and events to raise money had to be limited to no more than one CFer. The birthday parties for the kids with a common disease came to an end. Most knew that they were dying but even sadder for them was that they could no longer experience it together.
That's what Five Feet Apart is a story about. Two CFers in their late teens (something dreamt of back then) find attraction in their common experience and in each other. But, because of pseudomonas, they can't experience the intimacy that most late teens do.
Among many, Sonya, Renee, Rebecca, and Alberto, know that the fight goes on and you have shaped my life and provided motivation and comfort through the good and the bad.
FLOODS: In the Santa Rosa Press Democrat, the team reports on the floods that hit western Sonoma County this week:
"Sonoma County officials estimated 2,022 homes, businesses and other buildings had taken on floodwater, based on a preliminary analysis of flood maps, a county spokesman said. The water was expected to begin receding by midnight Wednesday but remain above flood stage of 32 feet for 24 hours, county officials said.
LIVIN' DAVITA LOCA: For those who weren't living under a political rock in 2018, the costliest ballot fight on the November ballot was over Proposition 8 to increase "patient protection" and limit profits of dialysis clinics. The proponents were Service Employees International Union-United Healthcare West (SEIU-UHW) and those who funded the opposition campaign were largely a companies that operate the often shopping-center clinics, which have taken over many such services from hospitals and other traditional healthcare options. Opponents to Prop. 8 spent $111,081,321.44 between January 1 and December 31 last year.
One such company is DaVita, which has twenty such clinics within ten miles of the Capitol. DaVita, the largest financial opponent to the measure spent $66,693,917.90 to oppose it, both monetary and non-monetary.
DaVita gave the California Democratic Party (CDP) $25,000 in the 2017-2018 cycle, all on March 28, 2018. SEIU-UHW gave the CDP over $1.3 million in monetary and non-monetary contributions in the cycle. The CDP Executive Board took a "support" position on July 15, 2018. Don't think I'm saying that the endorsement was bought SEIU-UHW as the Executive Board had a natural inclination to support the measure.
Given the history from the last cycle, you are likely surprised like me that DaVita reported giving the California Democratic Party $200,000 yesterday. On the report, it states that the relevant election is March 26, 2019. That's the date of the special elections in SD01 (Northeast Cal) and SD33 (Long Beach). In SD01, local delegates to the regional endorsement conference endorsed Truckee businesswoman Silke Pflueger. In SD33, a similar regional endorsement conference didn't reach the 60% threshold required to make an endorsement, although Long Beach City Councilmember Lena Gonzalez garnered over 50%.
SD01 is a safe Republican district where Trump beat Clinton by 15.7% in 2016. In SD33, most independent observers believe Lena Gonzalez to place in first with the suspense being around who will place in second to face Gonzalez in a June 4 special general. With the Los Angeles County Federation of Labor now having endorsed Gonzalez, she would be favored to reach the 60% endorsement threshold for the CDP endorsement in the runoff. Several of the 7 candidates other than Gonzalez voted for no endorsement in the regional conference, but that cohesion would be unlikely if it is down to Gonzalez and one more.
Under the state's campaign finance law, the party can't hand more than $38,800 ofthe DaVita money over to Gonzalez. However, it can spend big on communications to Democrats in the district touting an endorsement. Because that is member communications, the party can coordinate with the campaign, unlike non-party independent expenditures.
The dialysis industry has launched advertising on social media under the moniker "Dialysis is Life Support."
Last session's major dialysis clinic bill was AB 251 (Bonta), which would have capped profit margins of dialysis clinics. and was a gutted-and-amended in the Senate to insert the dialysis language on June 29, 2017 after it had passed the Assembly. However, it was gutted-and-amended again to be an issue related to San Francisco Bay Pilots (they're the tugboat people) as it was clear it was not going to get off the Senate Appropriations Suspense File.
Right now, the only major dialysis bill is AB 1448 by moderate Democrat Adam Gray (D-Merced), who chairs the juice Assembly Governmental Organization Committee. Gray's bill is about inspections of clinics. Gray has a ballot measure committee in addition to his committee for Assembly re-election where he routinely accepts contributions beyond that allowed in his Assembly committee. While he was restricted to $8,800 last cycle for his Assembly committee, contributions to his ballot measure committee are to limited.
DaVita gave $8,800 to Gray's Assembly re-election committee and $25,000 to his ballot measure committee.
Other donors to his ballot measure committee in amounts larger than to the candidate committee last cycle were tribes operating casinos, Anheuser Busch, PG&E, California State Association of Electrical Workers (IBEW interested in SB 901 re: PG&E), Fresenius (another dialysis company), Young's Market Company (major alcohol distributor), Hollywood Park Casino, Walmart, Wheels Financial Group (high-interest car title loans), Del Mar Thoroughbred Group, Los Angeles Turf Club, Thoroughbred Owners of California (horse racing), IGT/International Game Technology (slot machines), Personal Insurance Federation, California Independent Petroleum PAC, R.J. Reynolds Tobacco, California State Pipe Trades, Ghost Management Company (Weedmaps.com), PhARMA, Juul Labs Inc. (vaping company), and Phillip Morris.
You get the picture. Altogether, Gray's ballot measure committee raised $529,100 in 2018 and $242,152 in 2017. It spent $295,388.09 in 2018 and $203,801.92 in 2017. Where was the money spent? It was almost all operational to keep a bevy of consultants with the majority of funds spent on retainers. It's allowable under the law as long as it's related to a ballot measure or potential ballot measure.
Nobody will deny that Gray and his constituents have an interest in water measures, but it's not like he handed money over to official committees, keeping it instead with his consultants. Meanwhile, the state water bond that was favored by water interests in the Central Valley failed 49.3-50.7% after environmentalists, particularly in the Bay Area, split on it. It received only 40% in the City of County of San Francisco, while it received 54.6% in Gray's home Merced County.
Back to dialysis. With support of the dialysis companies, Gray has his kid gloves bill while a bigger prize-fight bout brews. Like last session, proponents and opponents of Proposition 8 last November are gearing up for a fight. It's not uncommon for proponents of something like the profit cap including in AB 251 and Prop. 8 to keep their cards close to their vest and not insert the language into a vehicle until later in the legislative process.
Dialysis companies fought back hard on Bonta's profit cap and then had to spend $111 million to defeat a state ballot measure. SEIU-UHW can easily qualify a ballot measure again for 2020. Does the California Democratic Party try to play a role in getting a negotiated solution, which was sought but failed last year to avoid the ballot measure, to keep it out of the mix during the presidential election?
Controversial ballot measures suck up television time and mail boxes. From the political parties' perspective, negotiating away these battles (including split roll property tax) are a high priority, but the interest groups are far apart on both dialysis and property taxes.
PG&E: During its full-year and fourth-quarter financial pre-market release this morning, Pacific Gas & Electric stated that an investigation continues, it is "probable" that the bankrupt investor-owned utility's equipment was responsible for the start of the Camp Fire in 2018, which is California's largest and deadliest fire in history. It also announced that the company was recording a $10.5 billion charge for 2018 and a $1.0 billion charge for 2017 related to the fires.
A STAR IS BORN: During the Michael Cohen hearing at House Oversight yesterday, everyone was waiting to see how Alexandra Ocasio-Cortes would come across, and she surpassed expectations. However, the Democrat who drew the most praise was California first-term Congressmember Katie Hill (D-Santa Clarita). While a large number (majority?) of committee members are lawyers by training, Hill is a former nonprofit executive but had firm and specific questions that caused her to shine. It led her to an appearance on Anderson Cooper's CNN show last night and other media appearances.
Of course, in these high-profile congressional hearings, nobody is going to pretend that members walk in and ask questions off the top of their heads and they are usually written by staff of members or committees. That said, Lady Gaga was one of four writers of Oscar-awarded best original song "Shallow." Katie Hill was Gaga and Bradley on the stage yesterday for Democrats looking to see how the newcomer would perform.
FROM THE DESK OF THE DEAN: For the Los Angeles Times, George Skelton looks at the proposal by State Treasurer Fiona Ma, Insurance Commissioner Ricardo Lara and State Senator Bill Dodd to allow the state to buy private insurance to protect the state's budget in years when disaster response far outweighs the state's budget funds for such emergencies. Dodd's bill SB 290 would allow such insurance, if funds are provided by the Legislature, for the variety of possible disasters such as but not limited to wildfires, earthquakes, floods, or the story from earlier this week, volcanic eruption.
"As for the state buying insurance to protect itself against breaking the budget, the politicians need to remember one thing: Both the state and the insurer can’t be winners. One will get burned."
RECYCLING: Today, Consumer Watchdog is holding a presser to argue that Californians lost out on at least $308 million in recycling deposits because it is difficult to find places that accept the 5 cents for a can return. Don Thompson reports for AP:
"In the last five years, about 40 percent of California’s recycling centers have closed, with more than 100 closing in Los Angeles County alone. The state says 1,600 centers remain open statewide, but advocacy group Consumer Watchdog said there are still barriers to Californians finding a place to recycle and that many grocery stores won’t take back the empties.
The group’s report set for release Thursday suggests several reforms to California’s 33-year-old recycling program, which has struggled to be profitable. Democratic state Sen. Henry Stern has also proposed changes to the program.
Consumer Watchdog faults state regulators for lax oversight, saying they should more aggressively fine major retailers that won’t redeem containers or undercount the number of deposits they collect. It says the California Department of Resources Recycling and Recovery, known as CalRecycle, should spend more money to promote recycling centers and punish companies that hoard deposits.
“Overall, the program has been highly successful, but recent years have brought challenges,” responded CalRecycle spokesman Mark Oldfield, citing broader market conditions. He said the agency is looking for ways to help increase buy-back locations but put the amount of unredeemed deposits at $272 million, which the consumer group says omits administrative fees that bring the total to $308 million."
As part of it's recommendations, Consumer Watchdog recommends the doubling the deposit from 5 to 10 cents. I guess my thought is that it would just encourage the people who come and harvest them out of the city recycling bins to double their efforts. I don't mind it and they are mostly older immigrants in my neighborhood, although some go on private property to do so. That can become a liability for property owners if they slip and fall on a hazard on private property.
Additionally, Assemblymember Richard Bloom (D-Santa Monica) has a spot bill for a new tax on sugar-sweetened beverages that would create a fund to educate consumers on the hazards of the drinks. While the bill doesn't have a tax amount in it, a 2 cents per ounce amount, which was in a bill by Bloom last year.
I have no problem with the deposit program, but I think the reduction in consumer recycling centers has more to do with city-wide recycling programs. And, while individual residences have recycling cans, larger multi-family housing structures often have cans/recycling dumpsters inaccessible to scavengers.
Let's think about a twelve-pack of Coca-Cola. Under the possible proposal to impose a 2-cent tax per ounce the sugar-sweetened beverage, that's 2x12x12, or $2.88. Then, increase the deposit by 5 cents per item and that's another 60 cents for a total of $3.00 in new taxes/deposits. I don't buy soda unless I'm at the movie theatre and that is diet, so I had to look at how much a twelve-pack of Coke is. On Amazon Prime, it is $3.69 before the current deposit or sales taxes. So, add Sacramento sales tax of 8.25% and you are at $3.99. Then, add the current 60-cent CRV deposit and sales tax and you're looking at $4.59.
With the new taxes and deposit, you're talking about $7.59, or 63 cents per 12-ounce sugar-sweetened beverage. That's a 65% increase if both the CRV is doubled and a sugar-sweetened beverage tax is included.
I know we all believe in health, but I know plenty of you also love your fancy sugar-sweetened drinks, such as Starbucks in cute bottles, Gatorade, Izze.
I want more recycling and a reduction in sugar-sweetened beverage consumption. However, recycling has shifted from retail to "wholesale" through cities and it's built into the contracts with the waste firms. Recycling centers have declined not because the CRV isn't high enough, but because China has stopped buying much of our disposed goods or has imposed higher standards for the purity of that which is acceptable. From that Bee article from last year:
"For one week in early February, roughly one-third of all recyclables collected by Sacramento County — an estimated 290 tons — was packed into trucks and dumped at a county landfill.
The amount of cardboard, newspapers, bottles and cans taken to the landfill totaled about 8.5 percent of the 3,400 tons of recyclables collected monthly, said Doug Sloan, director of the county's Department of Waste Management and Recycling.
"The last thing I want to do is put curbside recycling in the landfill," Sloan said."
And yes, it is 7am on Thursday and I just heard the City of Sacramento recycling truck passing through the neighborhood.
CRV is regressive. Low-income areas have fewer large-footprint grocery stores, meaning fewer recycling opportunities. This was recognized by Senator Scott Wiener's SB 458 in 2017 which creates pilots to help address the issue. Additionally, small family-owned convenience stores charge higher prices not because they are gouging, but because they buy in smaller quantities and rarely are provided the same "promotional" opportunities as bigger boxes, which are essentially placement fees.
It's too early to find out how much more soda costs at Southside Market across the street, a convenience store owned and completely staffed by a local Hmong family. They only sell sodas as singles and I am sure it's far more than the silly Amazon Prime Pantry example I used above to make the equivalent 12-pack. That said, kids go in there to buy Gatorade before playing soccer across the street in the park.
These soccer or frisbee-football players buy the 32-oz sugar-sweetened bottles and justifiably so on a hot day when they are going to be running. After all, the towels around the necks of Kings and Bucks players last night were advertising it and, while admirable Gatorade has created zero-calorie alternatives, a sports coach likely thinks that is silly. A two-cent tax per ounce and a CRV increase would be 69 cents more and hurt the family's business even from what many would see as a legit sale.
Assemblymember Bloom's advocacy for education about nutrition deserves applause as these are critical public health issues, but we have to consider these things together. Last year's AB 1003 never made it to a fiscal committee to identify how much would have been raised. Perhaps there are alternatives to a new tax, which is unlikely to get the two-thirds vote in both houses for approval.
Remember that there are a lot of bottling plants in member districts around the state, not to mention over 2,000 Starbucks that dump a lot of that syrup in your fave drinks. (I'm a black coffee or tea guy these days.) Like Dart Container through big political spending and three plants across the state (Lodi-AD09, Chino-AD52, Corona-AD60, but who is counting?) defeats every effort to eliminate polystyrene containers (those things your to-go food often come in) and your red beer pong cups, beverage manufacturers and distributors have big political spending and a huge grassroots lobbying base.
By the way, that venti Peppermint Mocha Frappuccino® you picked up at Starbucks over the holidays? 84 grams of sugar carbs. That's eight-and-a-half candy canes at one sitting. An iced venti is 24 ounces, or a 48-cent tax under last year's bill (depending on some unclear definitions).
THE "T WORD": CapPubRadio's Ben Adler reports that while Jerry Brown ran on "no new taxes without a vote of the people" promise in 2010, Gavin Newsom's position is more nuanced.
SB 126 (Leyva and O'Donnell): The charter school accountability and transparency bill was sent to Governor Newsom's desk this morning. He asked for the bill so is fully expected to sign it. The charter school cap/moratorium bill won't be as easy.
OIL/GAS SEVERANCE: Joel Fox opines that, as you can guess, he's no fan of the proposed oil and gas severance tax. "If the oil severance tax is not enough to threaten the industry, the split roll property tax initiative destined for the November 2020 ballot would levy another hit on many producers’ land and improvements."
FEINSTEIN: Joe Mathews weighs in on the confrontation by young climate activists of Senator Dianne Feinstein. "The kids have so much at stake in this debate. Feinstein, at 85, has very little. And yet, it’s the octogenarian who has the power, and the kids who have to beg for action from an elder who doesn’t really respect them.
OAKTOWN: The Oakland Unified School District postponed its board meeting last night, reportedly out of fear that the rally by the Oakland Education Association union could lead to violence. Thus, today is Day 6 of the strike. The OUSD statement on the cancellation is:
"The Board was scheduled to vote on budget reductions this evening. These reductions are needed to prioritize investing in a raise for our Oakland Education Association (OEA) members that will help students and teachers return to school as soon as possible.
Unfortunately, the teachers’ union (OEA) prevented the meeting from happening by directing members to picket “until meeting cancelled.” We are disheartened by tactics that directly interfere with the District’s ability to give the teachers a raise, and get students and teachers back into classrooms."
2020 and #CAKEDAY after the jump...
#CAKEDAY: Happy birthday to Eric Hogue, Favel Stoda Jens, Gibran Maciel, and Zachary Yeates!
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