My friend Hugo Campos, writes Susannah Fox, is originally from Brazil and taught me a lovely phrase in Portuguese about someone who holds all the cards, who seems to have all that they need to create change: “Está com a faca e o queijo na mão.” It means: He holds the cheese and the knife. This person has what they need to execute their vision. You want to be that person.
If any part of health care in New Jersey needs reform, it’s end-of-life healthcare. Patients here are likely to undergo more intensive medical care, in their final days, than in any other state. All this treatment rarely helps the patients; likely it just makes them uncomfortable.
David Barile MD, palliative care specialist, founded NJ GoalsofCare, a non-profit, to help everyone — lay people and medical people — achieve their goals for this stage of life that is often feared and ignored. “We’re working to set a new standard by helping healthcare providers, patients, and families make medical decisions that genuinely reflect a person’s wishes,” says Barile. He created educational materials and documents to ensure that patients would receive the care they need and no less, and the care they want and no more.
In our family, we have had examples of too much care, too little care, and just the right amount of care. The “just the right amount,” no coincidence, was supervised by Dr. Barile.
Now his small organization has coalesced into The Goals of Care Coalition of New Jersey. Its partners are healthcare providers, government agencies, and community organizations. Founding members are an impressive list: NJ Hospital Association, the Medical Society of NJ, the NJ Association of Health Plans, the Health Care Association of NJ, HQSI, the Home Care & Hospice Association of NJ, LeadingAge NJ, the NJ Health Care Quality Institute, the NJ Palliative Care APN Consortium, the VNA Health Group, Samaritan Healthcare & Hospice, the NJ Association of Health Care Social Workers and the NJ Association of Mental Health and Addiction Agencies.
From Robert Wood Johnson Foundation it has a one-year grant, $195,000, to address disparities in access to palliative care for minority populations living in New Jersey. It also landed a $75,000 matching grant, and here’s where I — and maybe you — come in. I’m donating, and I invite you to contribute. You can do it through a Facebook fundraising page or directly through GoalsofCareNJ website.
Talking about the end-of-life does not come easily! That’s why I believe both the medical people and lay people need the GoalsofCare materials.
Bottom line: When it’s time to say goodbye to someone you love, it’s such a comfort to know that the caregivers are following the patient’s wishes.
Scientific “war stories” were on the agenda today, as Bob Prud’homme entertained members of the Princeton Regional Chamber at the Nassau Club. Some of the twists and turns of his 40-year career at Princeton University revealed good news, some not so good.
In the disheartening category was the realization that, since virtually no drugs are manufactured in the United States, the U.S. stands to lose significant intellectual capital re drug development.
Why? A therapy doesn’t leap from lab to assembly line. It undergoes translation from research to retail in a “pilot” manufacturing plant, where veteran managers and supervisors can keep close tabs on quality control. Until recently the major pharmas built those pilot plants in the U.S., supervised by U.S. managers. If all the pilot plants move overseas, technical managers in the other countries will acquire that extremely valuable expertise.
On the heartening side, Prud’homme says he often finds himself working with research scientists in Asia whom he knows – because they were his students and collaborators at Princeton. Surely this answers any chauvinistic assertions that U.S. schools should limit the number of students from abroad.
In the good news category, Prud’homme and his collaborators get money from the Bill and Melinda Gates Foundation to develop drugs for global health. (UFAR founder Daniel Shungu, seen chatting with Prud’homme before the breakfast, is also the recipient of Gates funds.) What can sell in a blister pack at CVS won’t work for a third world country, which needs drugs to be packaged in jars that will last for six months in a hot damp climate. Princeton’s engineering quad leads the industry in meeting the need for these opportunities in drug delivery.
Only inexpensive drugs can be brought to poor countries. In contrast, cancer therapies are so costly that they can’t be used in the Third World. Prud’homme worries that cancer therapies will even be too expensive for OUR country’s insurance capacity, and that our healthcare business plans are in danger. Either our healthcare insurance will topple, or it will be outrageously unequally distributed, or the people will make decisions about what gets covered and who doesn’t.
One fix would be to deny $60,000 immunotherapy if it won’t prolong life by at last a year. Another way is to adopt the single-payer system used in Australia and make the hard decisions. “I worry about the future of our healthcare system,” says Prud’homme, “and that we will have an unjust society. What problems are we willing to live with?”
Prud’homme memorably described the ins and outs of nanotechnology in clear terms. The challenge for using nano in injectable drugs is that the drug might disperse too quickly, before it reaches the target site. The difficulty with using nano molecules in oral therapies is that many molecules are hydrophobic. They do not live comfortably in water.
His lab, successful in conquering both challenges, has been selected as the “academic lab of choice” by the major pharmas. The story behind that reinforces MY conviction that our town is ever so fortunate to have this university and these research labs at our doorstep.
Many complain that because the university has “deep pockets” it should pay more in lieu of taxes. Exactly because Princeton University has those deep pockets, it can afford to offer generous terms to potential partners. Someone asked how scientists can get molecules through the patent process without revealing secrets to competitors. The answer, says Prud’homme, lies in the university’s motto “Princeton in the Nation’s Service.”
Nobody has approved this metaphor, but here’s how I would explain it. You have five pirates at your door for Trick or Treat, almost identically costumed. One has a face mask, Pirate X. When a big pharma (BASF, GSK, Pfizer, Merck – all Princeton collaborators) wants to secretly develop a molecule, Princeton sends all five to the patent office, revealing the identity of four, leaving one unidentified. This gives the big pharma lead time to develop Molecule X. (Somebody please comment if this comparison doesn’t work.)
Princeton University came late to the entrepreneurial market becauase. as Prud’homme acknowledged, research suitable for the commercial market used to be scorned by the academics. Princeton was one of the most hoity-toity of universities in condemning research that results in a salable product. He credits the philosophy of John Ritter (in charge of technology licensing) and the success of two researchers – Steve Forrest and Edward C. Taylor – with changing the university’s attitudes about the inviolable sanctity of basic research. Forrest (now at the University of Michigan) channeled his research on organic light -emitting diodes (OLEDs) into a start-up, Universal Display Corporation that leads the market for displays for smart phones and has revenues of more than $300 million. Taylor developed the cancer-fighting drug, Alimta, and the proceeds from that virtually paid for the university’s new chemistry building.
With its generous endowment, the university does not have to nickel-and-dime its collaborators, and its scientists and engineers can be “in the nation’s service.”
Find out what’s going on at Princeton University’s e-quad. What research projects will spawn the next billion dollar company? What, exactly, can we expect from nano technology? Hear Professor Robert Prud’homme’s entertaining stories on Wednesday, November 14, 8 a.m. at the Nassau Club. Plus, it’s a yummy breakfast! See you there — Click here for details.
Here is daunting but necessary information about food allergies – and this is for everybody, not just those with the allergies, or their parents or siblings, but also for anybody who has contact with food, and anyone in the classroom, and anyone in contact with the public. Everybody.
This account of the three-day convention for FARE, a national organization devoted to food allergy research and education, comes from Susannah Fox. (Yes, my daughter).
If you don’t know anyone with anaphylactic allergies (for whom mistakes can be fatal) at least dip into this post. You will understand why you get pretzels, not peanuts, on the plane. You will be more careful at the buffet, so you don’t accidentally drip tuna salad on another ingredient. You will learn something about kissing that you didn’t know.
On Thursday March 8 the Princeton Regional Chamber hosts Lori Gustave for its membership lunch at the Forrestal Marriott Gustave is VP of business development at Penn Medicine, which has taken over (officially, merged with) University Medical Center. If you think you might be sick in the next couple of years, you might want to hear how about how Penn Medicine uses an
“advanced care strategy” and organizes it around the patient’s disease or condition.
As for me, for the next few months, I will not focus hospitals, medical care, nursing facilities. Somebody can tell me what she said.
Journalist Jennifer Brea couldn’t get any doctor to explain why all her systems seemed to be collapsing. She used the Internet to diagnose her own disease, Myalgic Encephalomyelitis, better known as chronic fatigue syndrome. Her documentary, “Unrest,” starts out with shots of the University Medical Center at Princeton in Plainsboro. shows on WHYY and WNET at 10 a.m. tonight, January 8. It premiered at the Garden Theater with her husband, Princeton Politics professor Omar Wasow and Imani Perry doing the commentary.
The Guaranteed Minimum Income plan, or Universal Basic Income, is not new. It was researched by a Princeton company, Mathematica Policy Research (MPR), back in 1969. It’s the subject of Diccon Hyatt’s excellent cover story “Driven by Data” in this week’s U.S. 1 Newspaper.
Led by Paul Decker, MPR is a company I’m proud to have in Princeton.
I’ll start with Juliet Eilperin’s coverage of the healthcare bill in the Washington Post, “From hospitals, doctors, and patients, a last gasp of opposition to the Senate health-care bill,” A Daily Princetonian alumna, the Post’s senior national affairs correspondent, she tells of how hospitals have mounted unusual lobbying efforts. ‘While McConnell had been pressing for a vote on the measure before the end of June, the delay gave opponents more time to marshal their arguments and make their case to lawmakers. This final lobbying push represents opponents’ best chance of derailing McConnell’s final drive to passage, which continues to look uncertain.’
Today the CEO of Incyte, Herve Hoppenot, speaks at the Princeton Regional chamber lunch. Look for me in a striped jacket. At age six I ‘worked’ in my parents’ cancer research lab and 70 years later I have a vested interest in new cancer cures.