Leave your cancer question in the comment section here. I will review questions periodically, and post general answers when possible. I am sorry but I cannot give individual medical advice, and this blog is not intended to be used to guide treatment. If you need to reach me for additional services, please visit the Forensic Services web site.
Did you know that you have the legal right to see your medical records? ALL of your records: test results, X-rays, hospital notes, and even doctors' notes. Do you know what's in your records? Do you know how to access them? Do you even want to see them?
What's in your records?
1) Test data (labs, X-rays, scans, etc.) 2) notes written by a medical professional--MD, PA, etc.--during an encounter 3) doctors' orders (meds, tests, etc.) 4) Documentation of encounters including date, time and bills.
Previously, records consisted of a few hand-written doctor's notes and test results for a single patient, usually
contained in a folder in the doc's office. Today, records are massive and inclusive, due to Medicare, lawsuits and the growing health care and insurance industry's demand for more paperwork. The adoption of electronic records, mandated by federal law in 2014, made it easy to expand even further. Even simple hospitalizations can produces hundreds of pages of notes!
The hope was that electronic records would link all doctors, hospitals and labs so it would be easy to obtain to get life-saving information and coordinate care, and avoid repeating costly tests. So far this has not happened. Records are as fragmented as your health care, with each facility having its own records. Furthermore, most are running computer programs that are incompatible with other facilities. So it's still up to the patient, to request that one office print out and fax the records to another office, or provide a printed copy to hand-carry.
Getting your medical records and finding what you want in them
The HIPAA law of 2012 gave everyone the right to see his or her own records. It required a written request, expensive Xeroxing costs, and long waits to have the X-rays sent. It's faster now with electronic records, but it's still not easy.
First of all, they are not all in one place. You will need to know the dates of service and which facility to ask (where did you go to get that blood draw? Who did your mammogram 2 years ago?). Each facility has its own rules for releasing records to the patient, and fortunately most larger clinics have offices to assist you. At the very least, you will have to sign a release form and show an ID. If you want your records to be sent to another doctor you will have to sign a release, but they must send or fax them promptly. If, on the other hand you want to get your own copy and carry them yourself to that doctor, it will take longer; you will have to request a paper copy, and a disk with X-ray images.
In early 2014, a new federal law gave patients the right to access their test results directly from the laboratory instead of their physician, as was the custom and law in most places. Many labs are still not comfortable with this request, but you will have to remind them it is your right. You will still have to show ID and sign for them.
If you request ALL of your records from an institution you will receive a huge stack of papers, containing everything from billing records to hourly documentation of your vital signs from a hospitalization. Unless you are considering a lawsuit, you probably don't want all of this; most likely you are only interested in seeing your lab tests, X-rays, and doctors' notes. Finding the information you want is like looking for a needle in a haystack and there is no easy way to do it, unless you have electronic access like your doctor does. You can use the health portal, if your institution has one, to see much--but not all--of the information that you desire.
Your "health portal"
Many health care systems and large institutions now have "health portals," giving patients online access to some of their medical records. You will need to register, and set up a password-protected account to use it, and you may need a code from your clinic. There may be a smartphone app, too.
Only a portion of your records will be available in a portal. These include the summary of your clinic visits, some of your test and imaging results (not the pictures), a list of your medications, dates of upcoming appointments and scheduled tests. There is usually a link to send an electronic message to your doctor and receive an answer--similar to a text or email. You might be able to access test results, order and other doctor's visits--so long as they occur within the linked health care system.
What health portals do well is facilitate the "business" of medicine. It is easy to view what you owe and pay your bills. The portal keeps you within the system for scheduling tests and referrals, and sending reminders to make sure these appointments are kept. Yes, they help you spend your health care dollars with their system instead of a competitor.
The bad news: the lab and X-ray reports are visible only after the doctor who ordered them has reviewed them, and only if they were done at a facility linked to the portal. After an office visit, the "clinical summary," which you are given on paper and in your portal looks impressive, but don't be fooled. It contains very little data and does not include the doctor's note. In fact, few portals give you access to the note that the doctor has authored, which contains your history, physical, and the doc's analysis of your case. If you want to see this you will have to make a specific request, usually on paper.
Other concerns with these portals: your medication list can be out of date or even incorrect. It may be incomplete, including only medicines prescribed at this facility and not by all your doctors. The list of diagnoses may be inaccurate or wrong, or out of date. And your e-messages may not be answered, or may be answered by someone other than a doctor. Having these electronic portals makes clinics lazy -- often they don't bother to call anymore to discuss your results or reassure you.
Patients without electronic access
Many patients are don't utilize electronic records because they are not connected: they don't use computers, don't have secure internet access, don't know how to use their portal, never set it up--of just don't remember their password. This group includes those in most need of medical services--the elderly and indigent.
And there are still people don't want to see their records. Perhaps they don't want to hear the bad news from a computer, or just don't feel they can understand the details. They are happy to let their doctor take the responsibility; they still have to be accommodated.
If you are a caregiver of a patient who is under active care but does not have electronic record access, you might be able to obtain "proxy" access, with the patients' permission. Many people do this for their elderly relatives and friends, because it helps them keep track of clinic appointments, medications, tests, and prescriptions. Ask the clinic about it.
Who else can see your record?
Legally, your records can be seen by people who "need to know," such as those who pay your bills, and other physicians and nurses involved in your care. There are strict laws regulating who this is and what they can access. Still, many people are worried about loss of privacy, or sensitive details about them getting out. A diagnosis of venereal disease, or a terminated pregnancy, or a cancer diagnosis can be your friend the nurse will lose her job and go to prison if she is not providing care but looks at your chart, or shares details about your medical condition.
Correcting mistakes in your records
You have the legal right to correct errors in your medical records. Because the record is a legal document it cannot be modified, but it can be amended. The amendment will be indicated as such, as well as the date it was added. You may have to put your request in writing, and they have 60 days to respond to it; if they deny the amendment they will have to notify you; you may still add a formal, written disagreement to the file.
The down side of seeing your records.
Doctors have always had mixed feelings about showing medical records to patients, and most health facilities had strict rules against it until 2012. Docs felt that it is one thing to read a test result, biopsy report, or radiology report, but another thing to interpret it and understand its significance within the context of the patient's diagnosis. That requires a fair bit of knowledge, and an understanding of the medical condition of the patient for whom the tests were ordered.
Without your doctor's input, viewing your records can cause unnecessary worry and anxiety. A lab test result that is flagged as "out of range" may be normal for you, or even improved. Or the result may be insignificant or meaningless. (See my recent blog about interpreting your lab results, Are My Buns Too High?). Another hurdle is the terminology. Medical term are derived from the Greek and can be complicated if you haven't learned the system; many words have similar roots and can be easily confused. For example do you know the difference between a "colostomy" (an external bag for feces) and a "colonoscopy" (a screening test for colon cancer)? What did your doctor recommend? You can panic if you read this one wrong! Also, physicians use abbreviations that have to be understood in context. SOB means "shortness of breath," whether or not you are a difficult patient or not!
The physician's tradition of keeping notes secret seems overly paternalistic in this day and age, but we've been taught to do it for the patient's protection, as well as for the doctor's freedom to think clearly and without censorship. Physicians write their opinions and a list of possible diagnoses, many of which are unlikely but still must be considered in the design of a diagnostic approach. It is reasonable to write, "cannot rule out cancer" for an unusual symptom even though the doc can see cancer is highly unlikely. Doctors' notes may also contain an abbreviated description that helps them to remember the patient, but may be considered derogatory or racist: "this is a 56-year old black male who looks older than his stated age," or "this obese, white woman..."
The doctor's opinion will be an honest reflection of his thoughts and assessment, which might anger or upset the patient if seen. A doctor will frankly write that a pain or disability claim is out of proportion to the injury and suspects malingering, or that the patient is seeking prescription pain medications, or there is a suspicion of alcoholism or depression, concern about child or spousal abuse (which must be reported), or worry of sexually-transmitted disease due to promiscuous behavior.
Many physicians are concerned that they will no longer be able to write their honest opinions in their notes for fear of being challenged, sued, or reprimanded by their administration. They will have to deal with insistent patients who want apologies or want changes. And answering frantic phone calls and emails from patients about misinterpretations and misunderstandings can be time-wasters for a physician who is already overworked! Doctors as well as patients have to learn how to be comfortable with these new laws of chart access.
What does the future hold?
Data mining of health records shows great promise in identifying inefficiencies and improving practices so as to provide better care at reduced cost. In addition to the business side of medicine, data mining can also help to improve community health, looking for disease trends or nutrition, for example. Medical research use is just beginning, but is likely to show tremendous payoff in the diagnosis and treatment of disease, and better understanding long-term effects of medication, or uncovering side effects. Protecting patient privacy in these investigations is paramount, and all research of this sort must be don on "de-identified" patient data.
The other challenge is to link electronic records across multiple health systems. Many software firms are already designing programs to do this, but it will be a difficult task, and there is little incentive for large health care systems to do anything that might direct business to a competitor. It would probably require a federal mandate and incentive funding, which is not likely in today's political climate.
Another solution is to store all of the data in the "cloud," rather than in individual health care systems' computers. This will allow it to be accessed readily by multiple providers as well as the patient, avoiding unnecessary duplication and facilitating coordination of care across multiple specialties. Yet worries about hacking and cyber attacks make us all wary of taking this step.
The ability to access your own medical records gives you the power to get more involved in your own health care. It's definitely worth your while to get to know what's in your medical records, and your rights regarding them.
Why We Should Repeal and Not Replace Obamacare with Another Insurance Plan: Thinking Out of the Box to Fix Health Care
Before you, my liberal friend, quit in disgust after reading the title, or you, my conservative friend, quit in disgust after reading a few more paragraphs, please hear me out. I'd like to get rid of Obamacare (The Affordable Care Act, ACA) and start over, re-thinking the entire concept.
My objective is the same as Obama's with the ACA, "to ensure that all Americans have access to high-quality, affordable health care." I have seen the results of Obamacare from many perspectives, as both a physician in a rural community, and a user of insurance and Medicare. I do not believe the ACA succeeded in its objectives.
Sure, Obamacare provided health care insurance for millions of Americans who didn't have it previously, expanded Medicaid for the uninsured, got rid of the pre-existing condition exclusions, allowed our grown adult children to remain on our policies longer, and started the ball rolling on electronic records. These are great results.
But Obamacare also caused the cost of health insurance to skyrocket; caused a lot of people to lose their insurance, and for some their jobs; forced many small doctors' practices to close, especially in rural areas; limited patients' choices in physicians and hospitals; led to an overall increase in health care costs, and to a decline in the quality of care in many regions. But worst of all, it put our health in the hands of businessmen, that is, the insurance companies. Let me elaborate on these points.
1. Obamacare mandated that all of our health care be managed by insurance companies. These companies' decisions are based primarily on profit for the shareholder, rather than on the insured's needs. In practice, that means your insurance company determines which provider or hospital you can use, which drugs it will reimburse, and how much it will pay out for your claims. And every dollar that an insurance company keeps for its shareholders or its operating expenses is one less dollar that is paid out for your health care.
Health insurance is, after all, insurance, which means it is designed to pay out a person's claim from the funds that it takes in from all of the people it covers. However, if the only people who sign up for insurance are sick, then the claims will be high, and everyone in the plan will have to pay higher premiums, or the company will go out of business. Both things happened with the ACA. We saw Obamacare premiums skyrocket after the first year, and private insurance followed suit. Many insurance companies chose to leave the Obamacare market, and in some areas only one insurer remained. This is not choice.
2. Health insurance in the US is traditionally tied to a job. Because of the ACA mandate that insurance be provided to full-time employees even in moderate-sized companies, many people either lost their jobs or had their hours cut to part-time because their employer could not afford the cost of insurance; others had seasonal work and did not have any benefits. With lower incomes and some savings, cars, and homes, they were not destitute, but they couldn't afford the Obamacare premiums because their income was still too high for a subsidy. Previously these working poor would take their chances; now, they have to pay tax penalties or buy high-cost health insurance, neither of which they can afford.
3. Obamacare did nothing to contain health care costs, which continue to rise. It's simple economics: with an increased number of insured, leading to increased demand for services in a fixed background of providers, the cost of these services increased. Unlike Medicare, no checks were built into what hospitals or pharmacies could charge.
4. Obamacare required implementation of such items as fully electronic medical records, electronic prescribing, and participation in accountable care organizations--requirements that were either impractical, unaffordable, or impossible for independent physicians and small practices in rural areas. Many were forced out of business.
5. The combination of an increased demand for health care in a stable field, along with the closing of many practices, led to people turning to for-profit care centers, pharmacist providers, and poorly trained PA's and nurse practitioners for their care, instead of licensed medical doctors. The result is lower quality health care.
6. Obamacare mandated that everyone had to be insured in order to make the model viable. Those who weren't insured have to pay a tax penalty. This makes sense from an insurance perspective, but it is anathema to the American way of life, which maintains that personal health decisions should be your own.
Here is how I would fix health care in the US.
1. The most important first step is to lower the overall cost of health care. The US spends almost 20% of its GNP on health care because we require our insurance pay whatever is asked, even though we don't know what the real cost is! A 20% GNP expenditure is twice as much as every other first-world country, whose health care is as good as ours!
How do we contain these costs? First, I would put into law statues that limit the amount that can be charged for medications, for physician services, for tests and for hospitalizations. Every other country does this, and we do it here, too, for Medicare. This is extremely unpopular with lawmakers, who rely on big money from the pharmaceutical, insurance, and hospital industry lobbies. We need lawmakers who are not influenced by lobbyists.
Next, we should have transparent pricing for all drugs and services, so people can comparison shop, perhaps getting insurance rebates if they save money.
Third, I would make medical training be tuition-free, and expand the number of physicians and residency positions, thereby increasing the supply of doctors who are comfortable working for lower salaries. Most doctors-to-be are not in it for the money, but find their school debts are so high that they have no choice but take high-paying jobs, forgoing work in a rural or inner-city practice.
Fourth, I would get rid of the middleman. So many industries see health care as a profit center to generate income when money changes hands, or to provide jobs for themselves based on hospital administration and health-related government bureaucracies, many of which are not necessary to give care to patients.
2. Medical insurance should not be tied to employment, which automatically excludes those who are unable to work or cannot get a job -- the ones who need it the most. No other country in the world does it this way. It should be available to everyone, and the tax incentives should be the same for all.
With medical costs lower, the cost of health care coverage will be much so much lower that many people will sign up for it. Others may join cooperative organizations in which people pool resources and pay out as needed--this is how some Amish communities avoid insurance. Still others may choose to pay outright for their medical care. These options will make health care a truly free market.
For myself, I would like to see a universal health care system, as you find in most other first world countries. It would be a health plan, not an insurance policy--like Medicare, but for everyone. In case you are not familiar with Medicare, all you need is a social security number and be age 65 or older and you are automatically covered for basic hospital services, while you can pay for outpatient care and medications if you choose, on a progressive, income-based schedule. Medicare tightly regulates how much can be charged for clinical services. Why not offer this to Americans of all ages?
To many people this is too socialist, not the American way, or even just too pricey. As a country, we have yet to come to terms with the recognition that we all pay for everyone else's health care in some way or another. From the uninsured who use emergency rooms as their primary care doctor, to the indigent or the mentally ill who are in dire straits--eventually this comes out of our tax money, or out of our own costs for medical care. We might as well own up to this and make health care a reality for all.
This ever happen to you? You just got your blood test results, and noted that a few items were flagged as "out of range." Your bun is too high! You albumin is low! Suddenly you feel ill. What's wrong? Do you have cancer? Are you going to die soon? Should you make your will?
Stay calm, take some deep breaths, call the doctor's office.
The nurse answers your concern with, "Doctor will discuss these results at your clinic visit in 2 weeks!"
Two weeks? You could die by then! What to do next?
First of all, don't panic. If you are feeling the same as ever, and the doctor said these were routine screening tests, it probably CAN wait for the two-week visit. On the other hand, if you were seeing a doctor about a new health problem, and she ordered these tests to help diagnose you, do NOT use this guide. You need to follow up with your doctor.
But if you're curious, and maybe just a little bit worried, you can use this handy layman's guide to see if your "abnormal" tests are significant. First, we'll look at the CMP (comprehensive medical panel). In a future post we'll do the CBC (Complete Blood Count.)
The CMP measures the blood level of several salts, proteins and chemicals. Why these items? Because they are the main components of blood serum, they are at fairly high levels, and are easy to measure in an automated machine.
Each test result gives the blood level (ignore the units) and a range for "average" results, for 95% of the population. Be aware this means 5% of normal, healthy people may be outside of the average range on any test--and it could be you.
The results of the test are printed out using standard abbreviations, such as K (potassium), glob (Globulins), and BUN (blood urea nitrogen). And by the way, BUN is pronounced as individual letters. B.U.N. NOT "bun" as in "hamburger." It makes me cringe to hear a patient say "bun" instead of its acronym, B.U.N.
You don't need to be fasting to get these blood tests, although many people mistakenly think you do, and put themselves through a lot of discomfort. If, on the other hand, your doctor wants to get an accurate measure of your fasting blood sugar, or of your cholesterol and lipids, then you will need to fast as requested.
When I order these tests as a routine screen, I pay attention to only three or four results. The rest can usually be ignored on the first pass, though they might be helpful to me to interpret a problem. Remember that a lot of tests can give false results because the machine is not properly aligned, the tourniquet was on too tight, the blood was kept too long before it was tested, etc., so don't be concerned unless the test is in Category 1 and is very much out of range.
Here is my interpretation guide for a patient's screening blood tests. I've omitted the reference rage, because it will be on the report. Using this guide, if you have an abnormal Category 1 test, your doctor should be in touch with you. Category 2 can wait a few days, and may require a repeat. The "ignorable" are just that.
CATEGORY 1. MOST IMPORTANT TESTS
The potassium in your blood is important in conducting electrical impulses in your heart and nerves, so your body keeps it within a fairly tight range for your heart to beat regularly, and for your nerves to function. The kidneys quickly pee out any excesses, unless you are taking a medication to prevent this. Too high a level (greater than 7) can be fatal, and can be caused by medications, kidney failure, cancer treatment, or taking potassium supplements or salt substitutes especially in combination with blood pressure medication. A slightly elevated potassium level is not dangerous and can be a false reading due to leaving the tourniquet on too long when drawing blood, or to abnormalities in the blood cells, or may require adjustment of your medication. A low potassium can be due to excess sweating (such as running a marathon), taking a diuretic for blood pressure, or diarrhea and vomiting. A slightly low potassium is not dangerous and can be corrected with pills or diet--there's lots of potassium in fruit including tomatoes and bananas. Low potassium can contribute to leg cramps or to feeling down. A very low potassium can be dangerous.
Creatinine is a breakdown product of muscle that your body makes which is disposed by the kidneys. It is used as a measure of kidney function--the lower it is, the better the function. Creatinine increases as you and your kidneys age, so it's important to compare it to your last few CMP tests to see if has significantly changed. It can appear high when you are dehydrated, but this usually goes back to normal. If it is high further testing and evaluation may be needed, but if it is very high you may need to be hospitalized.
This is a breakdown product of red blood cells that is disposed by the liver in the form of bile. It can be elevated due to a diseased liver, or a blockage of the bile duct, hepatitis, or destruction of blood cells (hemolysis). Some people have a hereditary slightly elevated bili; it's called "Gilbert's syndrome" and it's harmless. Your doctor can sort out an elevated bili by looking your other tests on the CMP and the CBC. Further testing may be needed. If your bili is very high your eyes will be yellow, and you need medical attention soon.
A high blood sugar is the most likely test to be found to be abnormal in a routine screen in a person without any apparent health problems. A blood sugar above 125 is significant if you were fasting before your blood draw; it may or not be significant if you ate within a few hours. Your doctor may to do some additional tests to determine if you have diabetes or pre-diabetes. A very high blood sugar (above 400) needs prompt attention and may put your in the hospital. A blood sugar below average is not a medical emergency unless you are taking a diabetes medication; a sugar below 50 is unusual without medication but can be serious.
CATEGORY 2: SOMEWHAT IMPORTANT (Ignore unless very abnormal)
Your body regulates the sodium level so the salt in your blood is approximately similar to that in seawater. This happens by concentrating or diluting the serum by regulating thirst and drinking water, or peeing excess salt, or storing salt as salt water in the legs (edema). You can tolerate a pretty wide range of sodium level without any serious effects, and your body will self-correct most of the time because you have a large storage reserve, so taking salt pills won't really help it. Sometimes the abnormal sodium is due to a medication you are taking, or a hormone or kidney imbalance, and your doctor will be aware of this.
Your body has pounds of reserve calcium in your bones, and uses it to regulate your blood calcium level by adding or subtracting, regulated by a few hormones. That is why the blood level of calcium does not help in determining whether or not you have osteoporosis (thin bones). A very high calcium (2 or 3 points above average) can cause symptoms such as tiredness, constipation, and even mental confusion. It is serious, and it can be due to a hormone imbalance, some forms of cancer, or to taking calcium pills with excessive vitamin D. Slightly elevated calcium may or may not be serious. A low calcium level can be due to a hormone imbalance.
Caution: Ca can be hard to interpret because the measured level also depends on your blood proteins. Low albumin is one of the most common causes of falsely low calcium. A high calcium can be caused by a blood technician leaving the tourniquet on too long.
B.U.N., Bun, or Blood Urea Nitrogen
B.U.N. is a measure of the urea in your system which, like creatinine, is cleared out by the kidneys. It can also be a measure of kidney function but it's not very helpful to the doctor, since it can be elevated for many reasons, including fasting or dehydration. A low Bun can mean starvation, or it can be normal for you. Best not to over-read it.
The following blood tests are rarely abnormal on their own. They are used mostly to interpret other abnormal blood test results. We won't review in detail.
ALB albumin. This is your major blood protein.
AGAP, anion gap. The anion gap is the gap or difference between the total level of potassium + sodium, minus the total of chloride + bicarbonate. A very high gap can mean there is another "unknown" ion. The AGAP may be elevated in some forms of poisoning, or with some medications or drugs.
Cl, chloride: a salt which balances the sodium in your blood.
Bicarb, Carb, or Bicarbonate: a salt which balances your sodium. It is the water-soluble form of carbon dioxide.
AST or GOT: a protein in liver tissue, and its level can help to sort out a liver inflammation or high bilirubin.
ALT or GPT. a protein in liver tissue, and its level can help to sort out a liver inflammation or high bilirubin.
Glob, Globulin: The group of blood proteins known as antibodies which fight disease.
These are your blood test results, in a nutshell. I hope this blog reassured you somewhat. Remember, don't panic. Call the doctor's office if you are still concerned about your results.
You can't afford to have cancer without insurance. Medical bills for cancer run from tens of thousands to hundreds of thousands of dollars, not to mention the unreimbursed personal costs, such as loss of income, babysitting, caregiver's costs, and transportation.
Paying for this is a complex process. About 60% of people with cancer will be 65 or older, and thus will be insured through Medicare. A few percent more will qualify for Social Security disability insurance. Some of the rest will have health insurance. The others face loss of savings, huge loans, and even bankruptcy.
But even with insurance or Medicare, many medical costs are not reimbursed--these include deductibles, co-pays for clinic visits, medical supplies, and outpatient medication. Cancer patients face especially high unreimbursed costs because their treatment may require frequent clinic visits or expensive chemotherapy pills with exorbitant co-pays.
Cancer patients and their physicians are obviously very concerned about the uncertainty of health care costs with the threatened repeal of the Affordable Care Act (ACA), or Obamacare under the new presidential administration. What will be the impact on cancer care?
In reality, it may be smaller than you think. Obamacare has helped with cancer care in some ways, but has made it worse in others. The most significant positive impact is guaranteeing health insurance coverage even in the face of pre-existing conditions, including cancer. Another improvement is in the ability to obtain insurance, even if you never had any in the first place. But the uninsured are still liable for the medical bills they already owe--and they have to wait for the 2-month open enrollment period (December to January) to sign up for it through the Obamacare insurance exchanges.
Where Obamacare has really failed is in cost containment. Enactment of the ACA led to rapid and often exorbitant increases in insurance premiums, or even the loss of coverage for those whose policies did not meet ACA standards. Worse yet, medical costs continued to skyrocket; we have seen ongoing increases in deductibles, co-pays, medication, medical supplies, and hospital charges. Although Obamacare does not apply to Medicare, there were collateral effects on its recipients, who faced mounting costs for their medication, for their supplemental insurance premiums, and higher deductibles. Obamacare did nothing to stop the increase in health costs, and may have made it worse.
What can we expect if Obamacare is repealed? What will replace it?
Replacing Obamacare may be the wrong place to start. I believe we should think outside of the box, and consider whether we really want to continue a system based on insurers calling the shots, while medical costs continue to increase. We must learn from the successes and failure of Obamacare, and develop a plan to lower health care costs, improve quality, and increase access, in some entirely different way.
What American voters like about Obamacare, and want to keep, is that it made health insurance available to everyone, it removed pre-existing condition exclusions, and allowed young adults to remain on their parent's policies through age 26. What people hated is that everyone was forced to purchase insurance (or pay a stiff penalty), and it did not lower health care costs but instead it increased them, as we have seen above.
The reality is that is impossible to keep the insurance features people loved without paying for them. This requires that everyone contribute to the insurance pool from which these costs are paid. You cannot have a system in which you only purchase insurance when you need it; medical care is expensive, and the money has to come from somewhere.
But what if health care costs were much lower, representing, say 7-9% of the GNP--as it is in most first-world countries, instead of the current 20% of the GNP in the US? If that were the case, health insurance would be much more affordable, and more people would sign up voluntarily, especially if insurance were not tied directly to employment and did not exclude pre-existing conditions.
What if drug costs were as low in the US as they are in other countries? What if we had cost transparency, so you could shop openly for the best price in tests and hospitals, regardless of state boundaries? What if large "non-profit" health care systems actually had to pay taxes on the money that they make? These tax funds could be used to subsidize care for the poor, and to help pay for cancer research and clinical trials. With lower costs it may even be possible to pay outright for routine medical care--like we used to do--buying inexpensive insurance only for catastrophic coverage, like cancer care.
Lowering medical costs would take a good administrator, someone who can negotiate like a businessman with insurance companies, pharmaceutical companies, and large health care systems. Someone who will not be influenced by lobbyists for Big Pharma, Insurance, and Mega-hospital systems. It will be interesting to see how the new administration approaches this problem.
I am hopeful that the Obamacare repeal--as inevitable as it appears to be--will mean a new beginning for cancer care.
A breakthrough treatment for lymphoma was announced at the American Society of Hematology meeting today. The treatment, Kte-C19 (generic name axicabtagene ciloleucel), is exciting not only because it works, but especially exciting because it is likely to be approved by the FDA within the year.
Why "Star Wars Medicine?" Because it uses modern, state-of-the art molecular engineering to convert our own white blood cells into killer cells that specifically attack cancer cells--and only cancer cells. In other words, the bland droids in our blood are engineered to become Starfighters that go directly to the cancer.
Converting these cells requires extremely sophisticated biology. In brief, a patient's white blood cells are collected, similar to donating blood for a blood drive. Then, the white cells are separated out, while the red blood is given back to the patient. Those white cells are then re-programmed so they will home in and destroy any cells that have the CD-19 protein, which is present on lymphoma cells.
The amazing thing is that the entire process, from cell collection to molecular re-programming, can be done in only 17 days. During that time, the patient is treated with low-dose chemotherapy to ready their body for the infusion.
What is so exciting about fast-track FDA approval? FDA approval means that any cancer doctor will have the ability to order the treatment, without having to send the patient to a clinical trial, available at only one or two medical centers. And if the drug is FDA approved, then insurance will cover it.
That means that the 30% of patients who currently have lymphoma today who fail chemotherapy or relapse early will be able to get this drug in another year or two, when they will need it.
In the meantime, it is likely that clinical trials will also be studying whether this drug works for the initial treatment of lymphoma. We are looking at a potential future in which newly diagnosed lymphoma patients can finish their treatment in 3 to 4 weeks with only minimal inconvenience, without the months of chemotherapy, with its discomfort and side effects.
Kite Pharma, the company that makes Kte-C19, reported the results of their clinical trials, treating patients with aggressive lymphoma who had not previously responded to chemotherapy, or relapsed soon after treatment. In spite of their poor track record with chemo, 3/4 of them responded to the Kte-C19 treatment, and almost one half had complete disappearance of disease!!
A similar cell-based treatment, CTL019 (generic name tisagenlecleucel-T), made by Novartis, is being used for the treatment of acute lymphoblastic leukemia (ALL) in children.
This type of treatment will soon be studied in other cancers. Will this be the treatment of the future for all cancers?
I've had several questions about using alternative cancer treatments, such as laetrile, and it's time I addressed them here.
"Alternative treatments" are untested, unlicensed or unproven treatments given with hope that they will eradicate cancer. These herbal or holistic treatments are not part of conventional medical treatment because there is no rigorous proof that they work, and that is why the FDA has not approved them, and insurance will not pay for them. Standard chemotherapy is often derived from natural substances such as these, but the anti-cancer activity of these drugs was then confirmed by rigorous testing on thousands of patients which showed that they were effective in slowing cancer growth, extending life or relieving symptoms.
There are many reports and testimonials in the literature and online about new treatments associated with cancer cure. When (or if) these are taken to the next step, many fail to demonstrate their activity on other patients when subjected to the rigor and discipline of testing that is required for scientists, doctors, and the FDA to confirm activity. In the US they cannot be sold or used as cancer treatment, but may be given or sold as "dietary supplements" or used as complementary support for cancer patients. Outside of the US, though, many countries allow clinics and retailers to make unwarranted claims, and give alternative treatments or sell them online. Offshore clinics usually have no regulatory oversight. In the US, alternative clinics always offer conventional treatment as well as their unproven modality so they could legitimately claim to offer cancer treatment. Such businesses prey on the vulnerable.
Yet some people will try anything because they are desperate. If you do, know the risks:
1. Most herbal remedies do not have enough active ingredients to have any effects, but others can be harmful. For example, laetrile, also called "vitamin" B12 (it's not a vitamin), has contains enough cyanide to kill you if given in large doses. It was long discredited as a cancer treatment in clinical trials, but its popularity continues as a folk remedy.
2. Many patients look to alternative treatments in order to avoid the side effects of chemotherapy, even though some can have have toxic and unpleasant side effects.
3. Some treatments may be harmless on their own, but can have serious interactions with conventional chemotherapy or radiation. Tell your doctor if you are taking any of these while you are on active treatment.
4. Delaying standard medical care to try alternative remedies may allow a curable, Stage I cancer to progress to an incurable Stage 4.
5. Alternative remedies can drain your resources, especially if they involve going out of the country, or checking into a "clinic." This can easily drain your savings, leaving no resources for you or your family to deal with the costs and complications of advanced cancer.
Alternative treatments are not ignored by the medical community. This segment of treatment is under study by the National Institutes of Health, through the National Center for Complementary and Alternative Medicine (NCCAM). Accredited cancer centers may even have ongoing clinical trials testing supplements or procedures. The NCCAM web site is a valuable resource for people interested in complementary medicine. But be warned you are unlikely to fight your cancer if you treat yourself without the addition of conventional therapies.
What is a carcinogen? Does a carcinogen always cause cancer? How worried do I have to be if I've been exposed to one?
The feeling that random contact with a normal, everyday substance might lead to cancer can be frightening. Yet, most people don't have a clear understanding of what it means, and whether or not they are going to get cancer.
I've had two recent questions about exposure to carcinogens. To address them we need to understand what we are talking about with carcinogens.
Nikhil Khanna posted this question: " Today we had some fried snacks which were wrapped in a newspaper... we noticed that the ink from the newspaper print was getting leached onto the snacks... I read on the Internet that newspaper print ink causes cancer and I got really worried... Will we get cancer because of this?"
A Facebook reader posted: "Today I bought around 7 strips of medicines (capsules and tablets) for my son that was packed in blister plastic packs and...they were exposed to the sunlight for around 2 hours. Should my son take those medicines, as I am scared of the blister plastic leaching harmful chemicals?"
First of all, a carcinogen does not cause cancer; cancer is caused by DNA mutations. It's a matter of random chance whether or not DNA damage occurs, and whether those mutations turn the cell into a cancer. A carcinogen can increase that chance of mutation and cancer initiation.
A person's risk of developing a cancer, then, depends on carcinogen, the type and amount of exposure, and their own genetic susceptibility (which you can't control).
There are only a few very strong carcinogens, and only a few exposures raise your cancer risk significantly. These include some chemicals and radioactive substances taken internally or breathed in, such as I131 exposure with nuclear fallout or nuclear testing. Even then, most people exposed do not get cancer. For example, it was estimated people exposed to the Chernobyl nuclear plant disaster had an estimated 3 to 4% above normal cancer levels. Other carcinogens are very strong -- such as the tars in cigarette smoke -- whereas other are very weak. Ingesting some substances are more likely to make you sick from toxicity or poisoning than getting cancer from it (such as arsenic, a strong carcinogen). The type of carcinogen impacts on kind of cancer that is at risk. For example, I131 from Chernobyl causes thyroid cancer since it is concentrated in the thyroid, whereas the tars found in cigarettes cause lung cancer.
A chance encounter on the skin or a very tiny amount ingested by accident is not likely to cause much harm. What is important, though, is repeated exposure to the chemical, such as in the workplace or in daily life. There are workplace guidelines. National Institute for Occupational Safety, NIOSH, and the Food and Drug Administration (FDA) may comment on exposure to a substance can increase cancer, and limit exposure to acceptable levels.
If you know a substance increases cancer risk, then you will want to avoid excessive exposure, or at least weight your risks. Exposure does not guarantee you will get cancer--not every smoker gets lung cancer, but smokers are 23 times more likely to get cancer. The choice will be up to you.
That of course brings up the question of what is a carcinogen, and how strong is it. Just because a compound is a "chemical" does not mean it is a carcinogen--even safe, natural substances such as vitamins have chemical structure that look like they should be unsafe--such as Vitamin B12--but in fact they are necessary for life! The IARC -- International Agency for Research on Cancer, a part of the World Health Organization--keeps details lists of carcinogenic compounds, classifying them from "known" to "possibly" to "probably not." For many substances there is no hard data, and you can't really know--you can't test it on people, and testing on animals does not always give the same results. So a lot of things are classified as probably possibly unknown.
We are continuously exposed to things that can slightly increase our risk of cancer, and it is impossible to avoid them all or we wouldn't be able to eat or breathe. All in all, most cancers arise from random mutational events, not from carcinogens. There are many other things to be more worried about than getting cancer from your surroundings.
To answer Nikhil Khan, most newspaper inks are now soy based and non-toxic. In they past, newspaper inks contained heavy metals, which are both toxic and mildly carcinogenic; some glossy magazines still require these inks. Even if these were toxic inks, the level of exposure you might have had is so minimal I would not worry about it. I would, however, ask the food vendor to use plain paper because the ink on food is unsightly and spoils your appetite.
To the Facebook reader, I wrote that I would be more concerned that the medicine itself was deteriorating due to the exposure, and it might not maintain its potency. But still 2 hourse is hardly enough time for any significant breakdown to occur, and it takes a lot of PVC to even slight increase the risk of cancer (most pill blister packs are made of PVC).
How long have I got, Doc? Am I going to die? How much is it going to cost to treat this cancer? Should I get a second opinion? These are among the many questions that you were afraid to ask your oncologist, or asked and did not receive a direct answer. Why is it that you can't get a straight answer from your oncologist? Here are six reasons why, and what to do about it.
1. Your doctor does not have enough time to sit and talk to you
Oncologists today rarely have the chance to take off their white coats, sit back, and have a heart-to-heart chat with a patient. I consider these moments a privilege; they are all about what it means to be a doctor. If I stop to listen to what a patient is saying I can better serve his needs. We long-time practitioners struggle to free up time for these lengthy but valuable patient sessions. Sadly, the next generation of doctors may never have this privilege. Why? Talking to patients takes up time, and in today's medical practice, time is too valuable to spend on patients. Oncology practices are structured to use the doctor's time to make as much money as possible for their employers--and the oncologist has little say in the matter since he is no longer in charge. At risk of losing her job, a specialist may be required to see sixteen to twenty patients in a day, with an average visit of 15 minutes or less. Worse yet, much of this time is used by a nurse specialist or Physician Assistant, with only a cursory visit from the doctor. The practice administrator knows that more income is generated by giving chemo than by charging for face-to-face time.That is why an oncologist is under tremendous pressure to spend a little time as possible with a patient. Lengthy phone calls, emails, and family conferences also take up time that could be better used to see more patients (according to the practice manager). Doctors who don't play along can lose their jobs, if they don't quit first. This unfortunate situation is unlikely to be rectified until the entire medical system is overhauled.
What to do about it: Ask for more time. Tell your doctor that you have serious issues to discus, and request an additional clinic visit just for a family conference with the doctor--not with a nurse, PA, or social worker.
2. Your doctor doesn't understand what you are really asking
You may be too embarrassed to ask your doctor directly, or feel you can't handle the terminology, or may not even realize that you have a question. A very perceptive physician can tell that there is something on your mind and draw it out of you-- for example, your jokes about virility may indicate a concern for chemo effects on your sex life, or references to retirement could reflect concerns about your ability to work after treatment. But a busy doctor, or one who has no rapport with you, may not recognize that you have unanswered questions.
What to do about it: Think carefully about burning issues on your mind before you go to your clinic visit, and jot down a few notes to bring along. Sometimes it's easier to mention problems to the nurse first, who is more used to discussing medical issues with patients using lay language, and ask him or her to bring it up to the doctor.
3. You didn't understand your doctor's answer
There is a lot of jargon that an average patient does not understand as he makes their way through a system of baffling complexity. Patients are afraid, or intimidated, or forget their questions, or don't want to reveal that they don't understand a word of what was said. Studies have shown that misunderstanding can be so extreme that a person's perception of what the doctor said may be the exact opposite of what was meant! Some misperceptions are based on anxiety, others on medical ignorance—and at other times the patient only heard what he wanted to hear.
What to do about it: Take notes at every clinic visit, use a voice recorder, or bring another person with you to listen and compare notes. This is especially important at visits that discuss test results or treatment decisions. Your health portal (electronic chart) may give you the opportunity to contact your doctor and clarify the answer. Take advantage of it.
4. Your doctor thought she answered your question when she said, "because that's the way we do things."
At times you may not be satisfied with your doctor's answer. Perhaps you feel there are other answers or other alternatives. Perhaps you don't trust your doctor. Maybe you understand the correct answer, but don't like your doctor's attitude. And sometimes you just don't get along. Although your doctor may be the top in her field, and her answer was correct "by the book," the personality clashes may lead to a loss of trust, which in turn may interfere with your ability to be a good patient, and to receive good care.
What to do about it: If personality issues are interfering with your medical care, consider getting a second opinion or even changing doctors. The easiest way to do this is to ask to make an appointment with another physician in the practice. Alternatively, you can easily find a new physician in another clinic and request a second opinion. Changing providers is your right as a patient, and your clinic is obliged to provide copies of your records. Insurance will usually pay for a second opinion about treatment, diagnosis or surgery. Don't worry about hurting your doctor's feeling--your first priority is your own survival. You doctor will handle this professionally, and may be happy to give you up if you both don't get along.
5. Your doctor doesn't like giving bad news and avoids it as much as possible.
The relationship that a doctor has with a patient is delicately balanced, and it's an important part of the healing process. A doctor know he is not only providing medicine—he is providing comfort, relief, encouragement, trust, and . . . hope. At times an oncologist will downplay the bad news or side effects he wants to avoid undue concern for the patient or family members. This may appear to be evasive.
One reason doctors don't talk to their patients is that they don't like to give bad news--we are only human in this regard. Patients don't want to hear that they are dying, and doctors don't want to tell them. Recent studies have shown that most cancer doctors avoid discussing end of life care and death until it is too late to make realistic plans for advanced directives, hospice and terminal care. Professional societies like the American Society of Clinical Oncology have begun to take steps to help doctors and patients face these issues together, developing guidelines for care planning and encouraging more open discussion. But there is a long way to go.
What to do about it: If you think your doctor is avoiding bad news, request to have a few minutes alone with the doctor, without anyone else present. This will allow the doc to speak freely. One way to broach a difficult subject is to bring it up neutrally, saying, for example, "May I speak with you alone about my end-of-life and living will documents?" Doc will get the hint.
6. Your doctor doesn't know the answer
Yes, medical science does not know everything! Far from it--there is so much yet to be learned. And of course, yours might not have the details at hand. A good doctor will answer, "That's a good question and I don't know the answer, but I will look into it and get back to you by email or at our next visit."
The other reason you doctor does not know the answer is that your "doctor" is really not a doctor, but a mid-level provider who doesn't have the knowledge or experience to answer your question. Of course they care about you, and do the best they can, but a few years of Nurse-Specialist or Physician Assistant courses cannot compare with 4 years of med school, 3 years of residency, and 3 years of medical oncology training and years of practice.
What to do about it: If you are looking for more answers, then consider getting a second opinion, see #4 above. If you want to see more of your doctor and less of your alternative provider, then ask specifically to see the doctor. Be insistent, and talk to the clinic administrator if necessary. If you are still frustrated by the lack of a physician input, then consider making a permanent change to another practice, and make your displeasure known on the patient rating sites and on the clinic surveys that are sent to you.
(Excerpted and revised from the book, Ask An Oncologist: Honest Answers to Your Cancer Questions)