medical

Ten Tips for the Cancer Caregiver

The caregiver is one of the most important members of a cancer patient's care team. As a caregiver, you will be arranging transportation, spending hours in waiting rooms, being available for emergencies, and many other tasts. Whether you are a spouse, relative, or a close friend, this is a tremendous responsibility. Here are ten tips to help you survive as a caregiver. Woman-supporting-her-friend-cancer-young-women-having-89393347

1. Remember: the patient is the one who is sick--not you.

Don't dwell on your own medical problems, or the inconveniences you are going through to get her to clinic. Your charge may not have the energy to provide support for you, too--and she is worried about her own health, and is feeling guilty for imposing on you. Be there for her. Be a listener. You may be the only friend she has who is willing to keep her company when she is at her worst, in pain or depressed.  If you become discouraged about her condition, keep it to yourself. Remain positive and cheerful, even if you have to force yourself.

And don't forget: take care of yourself, too. Being a caregiver is a difficult and stressful job.  Ask for help if you need it!

2.  Clarify your role

Let the medical staff know that you are the caregiver and make sure they know how to reach you. Clarify whether you have any other legal standing, such as next-of-kin, medical "power of attorney," etc. Each of these roles has specific legal rights, such as ability to give consent for procedures, hospital visitation privileges, and phone or paper access to HIPPAA-protected information (including clinic appointments). Don't take anything for granted or you may find yourself in a bind. If you are not the next of kin, find out who has the authority and how to reach them. Bigstock-Elderly-couple-holding-hands-a-45695839

3. Write it down

Take notes or bring a recorder to every doctor's visit. Note if and when your charge has side effects from treatment, or symptoms such as pain or fever. Write down questions for the doctor--and encourage your charge to do this before every clinic visit. Don't rely on your patient's or your own memory for the short time the doctor is in the room with you.

Keep your own detailed medical records, including lists of prescription drugs and over-the-counter meds, dates of clinic visits and the name of the doctor; dates of chemo, injections, and radiation; dates of tests and location; test results including X-ray results. Don't expect the doctor or emergency room to have easy access to the record, because HIPAA rules and incompatible computer systems have made it much more difficult. You will want to get a folder or binder, because the papers really mount up.

4. Get online

Your patient should enroll in electronic medical records at every institution where he gets care, but even if he is not, you, as caregiver, will need access. You can check appointment dates and times, request prescription refills, find test results, and send messages to the doctor and her staff. Your patient may have to give permission for you to access her records and get your own password--ask the front office how to do this.

5. Arrange transportation Shopping

The patient and staff rely on you to get him there! Chemo treatments or procedures may be cancelled if there is no accompanying adult. If you can't be available to drive, find someone else.

6.  Look for ways to reduce the time spent at the doctor's office

Many cancer patients feel that they no longer have a life because so much time is spent at the doctor's office. And if you are the caregiver you probably feel the same way. Many clinic visits are scheduled because the computer had a slot to fill, or for the convenience of the staff--not the patient. You can request alternative dates and times to suit your own convenience, unless it is a chemo or radiation appointment.

Try to bundle appointments so they take place on the same day--lab, imaging and blood work, for example; see if the blood work and X-rays can be done closer to home; speak to the doctor about changing the chemotherapy schedule if it is too demanding --some chemo can be given ever 2 or 3 weeks instead of weekly, and some can be given in pill form, for example. And doctors will make every effort to accommodate a break for a special event, such as a wedding or new grandchild. But whatever you change, be religious about keeping the chemotherapy and radiation appointments--that's why you're there in the first place.

7. Offer to help keep an eye on the paperwork

Keeping track of the bills, appointments, prescriptions and other paperwork resulting from cancer care can be a full time job! It can be overwhelming for a person who is dealing with fatigue, side effects, and pain. Unless someone takes charge, bills pile up, the mortgage and taxes are unpaid, and disaster can follow.

Your patient may not want you managing her finances, but there are things you can do to help. At the very least, offer to keep an eye on the medical bill: check for errors in dates and treatments; confirm that insurance and Medicare were billed properly and that the claim was paid. Offer to make calls if there were errors, or negotiate costs if they are unreasonable. Make sure drug prices are not excessive--and you may have to shop them around or ask the doc to consider an alternative. Remind your patient that Medicare open enrollment starts in November, which gives him the option to change to ore affordable insurance and prescription plans.

8. Take advantage of social services. Images

At the start of treatment make an appointment with the social worker; see if your patient qualifies for: a handicapped driving hang tag; social security disability; paid sick leave, and subsidies for medications. You, as caregiver, may want to consider taking family leave from your job if things get difficult.

Take advantage of services such as handicapped seating at concerts and theaters, wheelchairs, motorized shopping carts, etc. Find out about local services such as meals on wheels, home health care, etc.; join a cancer support group; call the local American Cancer Society and see what they have on offer.

Have a plan if cancer progresses and you need additional help as caregiver. Ask the social worker about home health and nursing care and specialized medical transport--know the options under your patient's insurance. And don't forget to find out about hospice services, so you will be prepared in advance if they are needed. 

9. Plan in advance for emergencies.

Know whom to call during the day and after hours; ask what preferred ED to use. Know what symptoms require prompt attention, such as chills, fever, loss of breath, mental confusion, or sudden pain. If you call with problems, or make a trip to the ED, make sure to have available a list of medications, diagnosis, treatments, dates of treatments, and names of the doctors. Don't wait to call an ambulance or drive to the ED if things become too urgent to wait for a callback.

Make sure you discuss with your patient how she wants to deal with an emergency hospital admission--everything from moving a parked car, getting the house keys and mail, and feeding the cat. Know which relatives you will need to call, and who can consent for the patient if she becomes unconscious. Have copies of the insurance card, ID, and a signed copy of the living will (if needed).

Make sure the patient has addressed "end-of ‘life" issues well in advance.

Remind the patient to get necessary affairs in order, including passwords and access codes that you will need if she loses consciousness at any time during her treatment.

10. Keep living and having fun

The purpose of cancer treatment is to help the patient live as normal a life as possible for as long as possible. The purpose is not to be her life. Take a break to enjoy simple things, like a good movie, a restaurant meal, a glass of wine (she may have to cheat on her diet), a visit from a grandchild, a family reunion.  Celebrate small victories -- this will make it easier to deal with the large defeats.


Your Medical Records: What You Need to Know

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 Unknown
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 Doctor_typingrules 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. Maxresdefault

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.

 


Will the End of Obamacare Mean the End of Cancer Care?

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. WhoKnows?

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.


Star Wars Medicine -- New Hope for the Treatment of Lymphoma

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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? 


Alternative cancer treatment

    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.