Cancer: Lemons to Lemonade

Cancer is the diagnosis no one wants to hear. For some, treatment is getting better and survival rates are rising; for others it can be a death sentence. Still others find themselves in a sort of limbo, receiving chemotherapy, not getting much better, not getting worse. For much of the time, between chemo treatments, it's poor sleep, nausea, joint pains, general malaise, extreme fatigue and worse. The rest of the time the severity of the symptoms can lessen but they're never really gone.

Do they have to continue this way forever? What if they stop the chemo? Can they reduce the frequency? Can they reduce the dose? What are their options? Not unreasonable questions, are they?

Patients would welcome some guidance, some help in making a choice. If they ask their doctor, "What do the statistics show?" The answer will most often be, "We don't know"!

I have contacted the American Cancer Society, the National Cancer Institute, The FDA, and the Department of Health and Human Services trying to get these answers. Essentially they all said the same thing, they don't use historical hospital data. Eli Lilly, the maker of one recent cancer drug, Alimta, said the same thing adding only that the "standard dose is to be delivered every 21 days". When asked if they follow up hospital records to assess benefits or effectiveness of long term use they replied, "We don't have that data". After 6 months can the dose be safely reduced? "We don't have that data".

Surely patients have already made such choices in the past. Where is the information about those choices?

The sad truth is that the data is there, in every hospital, in patient records. It simply is not coordinated and analyzed. I asked an oncologist at the Dana Farber Cancer Center, one of the worlds finest cancer hospitals, if they pull their past data together to help answer these questions; "We don't have such studies." Individual doctors of course can review their own cases and try to draw conclusions but doctors are very busy treating patients and don't have the time or expertise to consolidate this data in a way that is scientifically useful. How ironic.

Pharmaceutical companies spend millions doing prospective studies on the safety and effectiveness of new drugs but once the drugs are brought to market there apparently is no effort to evaluate effectiveness after prolonged use. There should be follow-up. These questions deserve answers.

What if certain cancer drugs become less effective over time? These are not innocuous chemicals. They are toxic, they kill good cells along with the bad cancer cells, they make patients feel awful, and they cost a fortune. And when asked if their effectiveness diminishes over time we're told, "We don't know".

The federal government has announced a push to standardize and computerize patient hospital records to reduce errors and cut costs. This is a good thing.

And we should build on this and make it possible for investigators to access this data to analyze continued effectiveness of various treatments for cancer as well as other diseases. If the records were designed with a standardized format to include all data necessary for a scientifically valid retrospective analysis it would provide an enormous amount of information for doctors and patients. We have an extraordinary opportunity here in Rhode Island to do this. The data is there, waiting, in our hospitals and across the country.

What if we found that some long term treatments can be significantly reduced without danger? Think of the savings, think of the benefits to patients. It be wonderful for the Rhode Island Department of Health to embark on such a mission - to standardize and digitize all patient records while respecting patient privacy.

Rhode Island currently does keep track of cancer and related diseases (see Hospital Association of Rhode Island), but the reporting is not exhaustive and does not systematically track individual changes to treatment and their effect on outcomes.

This initiative will require creation of a team drawn from the Rhode Island medical community, including hospital and medical school staff, whose task it will be to standardize medical records, gather, analyze and publish the results in journals and on-line. This effort could serve as a model in which Rhode Island's medical community leads the way and helps our doctors provide even better medical care for our citizens.

Are We Doomed to Self(ish) Service?

You're either with us or against us is the philosophy that has gotten us where we are and it's a lousy place to be.

But the evidence abounds that this "either/or" mentality rules and when it comes to union issues it seems most visible.

When members of a private sector union are asked to sacrifice benefits for a company, they know that those sacrifices will benefit stock holders, executives, the company bottom line and their lenders - not necessarily bad things, but not something that will appeal to a worker's altruism and better nature.

When a municipal union member is asked to sacrifice benefits, is it because the stockholders want more profits, the executives need more compensation than their already obscene pay, or the city isn't wealthy enough?

Of course not. It's because the city, with the available revenue, is having trouble providing the services expected by everyone. If it's not possible to reduce costs then reduced services will surely follow.

If we don't see a difference, then our unions are in danger of becoming no better than their original foes - the selfish business owners who didn't want to give an inch to their employees. Only now it's the unions who won't give an inch to their employers, the property tax payers. We have to do better.

Will We Ever Not Be Stupid?

Read the blogs, read the papers, listen to talk radio, watch TV. It's the same everywhere.

The [you choose: right, left, Republican, Democrats, unions, businesses, liberals, conservatives] are un-American and think only of themselves. They are clueless and if you listen to them they will destroy this country we all love (except them, of course)

Can it be that we're really so dumb as to believe that only one side has exclusive access to the right answers and all the others are wrong?

Will we ever be able to stop and actually listen to each other. When (if) we finally do, we will benefit from the combined wisdom of our people and be the America we once were.

Maybe President Obama will let it happen. We can hope.

Dick Cheney's Comments

Dick Cheney was quoted in an interview with Politico.com on his views on terrorism and the Obama administration;

"The choice, he alleged, reflects a naive mindset among the new team in Washington: “The United States needs to be not so much loved as it needs to be respected.”

Mr. Cheney is at least partly right but I don't believe he's using the words he really means. I think he has conflated respect with fear and really means we must be feared if we are to be safe from a terrorist attack. Fear results from displaying power and military strength, being ruthless and flexing muscle.

Mr. Cheney, respect has to be earned by our deeds and principles. When we have once again regained the respect that we once had we will indeed be safer than we are now. On the other hand, fear spawns mistrust and even hatred which is exactly what the last eight years have given us.

So, Mr. Cheney, you are right. We need to be respected. If only you understood the difference between respect and fear.

When is investing not investing?

Most everyone is affected by the recent financial meltdown in the stock market and the economy in general. Millions have seen their investments in their retirement plans lose a huge part of their value and they are justifiably worried.

Since you have no influence on stock prices once you purchase them, are they really investments or should it more accurately be called gambling?

Some definitions of gambling include:

1) anything involving risk or uncertainty

2) take a risk in the hope of a favorable outcome

This sounds much more like what we do when we "invest" in the stock market. In fact when we buy a house with the goal of making a profit when we sell it aren't we doing the same thing? Indeed, we are gambling.

On the other hand if one buys a house to live in while raising a family or to enjoy retirement, we are more like the business owner who invests in his business. We too, maintain value by keeping our home well cared for and updated. We even may increase its value and if and when we decide to sell the home it may even be at a profit. So much the better.

But if our home is worth a little more or even less when it comes time to sell, have we not enjoyed our 'investment' all the years we have owned it and lived in it? This is a true investment.

We need to rethink our notions of investments and gambling. When we buy stocks and lose money on them we need to understand that we have lost a gamble; we made a bet and lost. If the price goes up our bet has paid off. It's a gamble not an investment. Our so called investment is actually a crap shoot and the most we can expect is that the dice aren't loaded.

If our pension plans 'invest' in the market and lose value we can be disappointed but don't whine about it. We lost a bet. If you don't want risk, don't gamble.

It's an ugly truth that transparency, oversight and basic honesty have been in short supply, and those in charge on Wall Street and in Congress need to be taken behind the woodshed. Despicable, greedy, dishonest behavior needs to be stopped, and punished and soon.

But the bottom line is that our economy has been built on gambling, and as any good gambler knows, you have to "know when to hold 'em and know when to fold 'em".

And let's not be stupid - always keep some 'real' money in the bank for emergencies. (preferably a bank that isn't getting a bailout)

But maybe it's just me.

Did you see this?

Did you catch this in President Obama's inaugural on Tuesday?

"It is the. . . selflessness of workers who would rather cut their hours than see a friend lose a job that sees us through our darkest hours."

When I recently suggested in a letter to the editor that teachers' union concessions would help ordinary Rhode Islanders, not corporate executives and shareholders, to weather this financial storm, I was trounced by union members suggesting I was just anti-union.

Why aren't they criticizing President Obama?

Some good news for Rhode Islanders?

Tucked away on page B3 of the Projo, January 21, 2009, was an article, "Supreme court to hear ethics appeal", which is certainly good news for Rhode Island citizens. In fact the Supreme Court decision may have a greater impact on us than the hugely important Inauguration of President Obama.

I hope that all Rhode Islander follow this case, which can determine whether or not RI lawmakers can be held to some standard of ethical behavior instead of ignoring the people. The current "speech in debate" clause is an impediment to honest and just government.

Politics v Ethics

Robert Benson Jr., in his Providence Journal, Jan. 2, Commentary, "Legislators can ignore ethics law" asks "Where's the outrage and protest?"

His concerns are real and frightening for every Rhode Islander no matter what party. Article VI, Section 5 of our state constitution says: "For any speech in debate, in any house, no member shall be questioned in any other place." Judge Francis Darigan has ruled that this provision means that a State Senator can not be prosecuted by the State Ethics Commission for his actions (read; votes) in the General Assembly.

The response in the local blogs to this piece was about whether more Democrats than Rebublicans were being held up as bad examples. This serves only to deflect attention away from an extremely important and serious decision by a Superior Court judge and turns it into nothing more than partisan posturing.

That's not what is important here. This is not a political issue, it's an ethics issue.

If current language in the Constitution insulates Senators or Representatives from charges of ethics violations, then that language must be changed, either by changing the Constitution itself or a challenge before the Supreme Court. As it stands now, this makes a mockery of our ethics laws.

Mr. Benson is right. Every one of us should be outraged.

Private v Public Unions

I believe our best teachers are underpaid, yes, underpaid, and that our very high per pupil costs come from other than teacher salaries. This must be remembered when we try to address a very serious problem facing cities and towns.

It is no secret that our cities and towns are struggling to pay for services and also stay within the tax levy increase limits. As revenues from the state are lower than last year, towns need to replace that lost revenue. One easy answer is to increase property taxes on a population that is already paying among the highest in the country. This will not sit well.

Another choice is to look for cost savings, and unions, especially teachers' unions, will surely be asked to re-negotiate contracts. This of course, will be met with resistance. But I hope everyone will keep the following in mind in these tough times.

When private sector unions make concessions, their sacrifices will go to companies whose executives often make millions in salaries and to shareholders whose dividends can benefit from those concessions.

When a public sector union makes concessions the beneficiaries are not high priced executives but the people, the homeowners, the citizens of Rhode Island. That is an important difference.

I know this will not make me very popular in some circles but I believe it needs to be said. It's not us against them. We have to work together and we'll get through this.

Let Teachers Teach

In the Commentary in the Dec. 14, Sunday Journal, "Great Public schools belong in R.I." by Daniel McKee, mayor of Cumberland, he makes some excellent points, first and foremost, that public education is arguably the most important issue we face both locally and nationally.

I think most people will agree that our students are our most valuable and precious treasure and that quality education is our most important goal.

The article suggests that the answer is to bring in new education models such as Mayoral Academies, which claim to consistently outperform Rhode Island's public schools by wide margins.

We should do whatever we can to improve student performance. But is bypassing the existing public school system the best, most cost efficient way? Would it not be better to utilize the existing teacher and educator expertise and let them work with others to develop and implement the changes needed to reach the goal of academic excellence?

However, I do see one enormous obstacle - the Teachers' Contract.

In North Kingstown's contract there are 26 Titles and 2 Appendices. All of them deal in some fashion with the obligations of the schools to the teachers. Not one paragraph specifies the obligation of the teachers to student performance.

There are no requirements for example, that student performance be improved in any measurable way. There are however four pages specifying limiting class size and teaching hours. There are eleven pages regarding sick leave and absences but not one defining teacher responsibilities and performance.

The entire contract is weighted heavily in favor of teachers' wishes ignoring the school department, students or taxpayers. At first blush it is easy to blame the unions for this lopsided document but in truth the unions are doing their job. Their first obligation is to the teachers, despite their frequent battle cry, "It's for the kids". That is simply a ruse; it's for the teachers and that's what they have been hired to do.

It's the School Committee that has failed in its obligation to provide the best education for our children and has simply bowed to union demands whenever "for the kids" conflicts with "for the teachers". For example, if the School Committee were to close a school due to drop in enrollment saving the cost of fifteen teachers, they could only eliminate ten because the contract sets the number to ten. We'd have to pay for five unnecessary teachers. "For the Kids"? Hardly. I'll bet if teachers were able to work with planners without union influence they could come up with an outline that would be far better for both the taxpayers and the children.

The Town Council should establish an Education Panel to outline needs and goals and, together with the School Committee, set forth an agenda which would include, at minimum, major consolidations, reduction of and restructuring of the bureaucracy, pay increases for the better teachers and the introduction of merit pay.

Before adding another educational system give the current system one year to satisfy that goal. If it fails then we can move on.