Affordable Care Act and Cancer

Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.

Not a good answer.

And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.

Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.

This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.

"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."

However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.

However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.

And the costs just keep piling up

Back at my first cancer adventure in 1981, my father advised me never to let my Blue Cross health insurance lapse because going forward with a pre-existing condition, I could always lose my health insurance. And that was something I could not afford. For quite a few years, until MA changed the law regarding pre-existing conditions, I would often pay for my own private health insurance to ensure I never lost Blue Cross. Even if my employer was offering another plan, I would pay for my own. That wasn't cheap.

Then I had more medical adventures and got to know the surgery department and ER a few more times. I kept my Blue Cross insurance and kept on paying. From time to time I would have a job which offered Blue Cross insurance. Then the law changed and I could stop that.

In the past 7 years since my second cancer adventure, I average a minimum of 50 doctor appointments each year. We max out our out of pocket coverage each year as well. One year a friend convinced to try to keep track of what insurance paid vs what I paid. No contest. I paid a tiny portion of the hundreds of thousands paid by the insurer.

So I am verification of a new study showing that after cancer, patients face rising costs of health care. All of a sudden you get more doctors and more appointments and everything needs to be checked because of your medical history, blah, blah, blah. And there are all the health issues caused by side effects of treatment that may never go away. The lost productivity costs because you have to go to the (damn) doctor or don't feel well enough to work that day. The list goes on.

But now it looks like a cancer diagnosis is financially as well as emotionally and physically taxing.

This is stupid

Why are patients with Medicaid diagnosed with breast cancer later than those with other insurance? This is our national health insurance for those without other insurance and it does not provide screening mammograms or educate its patients on the need for them?

"Stage II breast cancer was more likely to be diagnosed in Medicaid patients than any other insurance designation, including self-pay. We suspect this is the result of lack of use of screening mammograms or lack of access to care altogether. Further research needs to be performed examining the time course of diagnosis in the advanced-stage population. Surveying patients diagnosed with advanced-stage breast cancer as to whether they were undergoing age-appropriate routine screening or if they had impediments to gaining access to medical care would reveal possible areas for improvement in the healthcare system. It would be interesting to examine the barriers to care according to insurance status as well."

Stupidity at its finest. In the 21st century no less.

How good is your health care?

Now that we have a national healthcare system in place, a recent study on the quality of healthcare available in the US, state by state. They looked at things like dental care and tooth loss, obesity, death rates, and more.

I am lucky/happy to live in Massachusetts which has many good hospitals and doctors and had a mandated healthcare system for nearly 10 years. I have always thought I have received good health care over the years.

I read through the article and was appalled on some level at the level of health care available in differing states in this day and age. But then I read through the full report (17 page pdf) and was generally impressed with the improvements in the past five years.

So overall, while some parts of the country still do not have access to quality medical care, improvement is visible.

Some lessons to learn

We can learn some lessons here. In the US we are busy being annoyed with the new healthcare system or happy to use it. But we have it and have to learn to live with it or legislate it into something else.

I did not know this but Germany has a very similar health care system with the same issues - trying to reduce costs. We are busy thinking we are doing something new but we aren't. Except for a few differences, it already exists pretty much.

I am not saying the German system is perfect. But if you read about it, there are some key similarities.

My point is that while we are trying to reinvent the wheel we can learn from others who have already done so.

Sharing the burden

Recently UPS was criticized for dropping employee health insurance coverage for spouses who are eligible for health insurance through their employers. But that's only 15,000 people. The majority of their drivers and other employees are covered through Teamster's Union benefits so they will not be affected by the change.

A recent article called Employers Play Obamacare Blame Game discusses reactions to the shared costs complaints and how other companies are reacting to the upcoming changes.

The whole point of mandatory health care is to have a healthier population. This requires change. So of course employers are going to start shifting burdens around as much as they can. Companies which have provided the most benefits I am sure will be some of the first to start making changes.

There is a separate requirement, starting in 2018, where employees who offer richer policies will be required to start shifting more of the costs to employees or start paying a penalty.

People are dying or going bankrupt due to lack of medical care or the high costs associated with it. We need to share the burden and can't assume our employers or the government will hand us everything we need. Its part of taking our place in society and being a contributing human being.

There are those, including me, who face health or other issues, who can't contribute as much as others. But that doesn't make them any less of human beings.
If you do not like the current and upcoming changes for whatever reason, then you can do your part by cooperating with the existing legislation and work to find ways to change it.

What this is all called is change. Get over it. Change is needed to make health insurance more affordable and health care more available. Our current system does not work. Insurance companies, not doctors, are making decisions about the health of people.

This is stupid

Why are patients with Medicaid diagnosed with breast cancer later than those with other insurance? This is our national health insurance for those without other insurance and it does not provide screening mammograms or educate its patients on the need for them?

"Stage II breast cancer was more likely to be diagnosed in Medicaid patients than any other insurance designation, including self-pay. We suspect this is the result of lack of use of screening mammograms or lack of access to care altogether. Further research needs to be performed examining the time course of diagnosis in the advanced-stage population. Surveying patients diagnosed with advanced-stage breast cancer as to whether they were undergoing age-appropriate routine screening or if they had impediments to gaining access to medical care would reveal possible areas for improvement in the healthcare system. It would be interesting to examine the barriers to care according to insurance status as well."

Stupidity at its finest. In the 21st century no less.

Going without health insurance

One of the biggest arguments with the Affordable Care Act or Obamacare is that some people do not like to do what they are told. I fully support the freedom of choice and if people choose to go with out insurance and pay the annual fine because they want to, why not?

The main goal of the ACA is to make health insurance affordable and accessible for more Americans. I think it will do that. People have not gotten insurance because they were told they had pre-existing conditions, low income, or whatever reason. Now there are options for all.

A recent story listed some people and why they did not want to have health insurance. That is clearly their choice and as the penalties rise in the coming years more of them may change their minds. Also, as people age they have a tendency to develop ailments which need expensive treatments.

I think in the future, there will be care for families with small children and they will grow up with health insurance and expect to continue you having it. I do think there will always be those who choose not to. That is their choice.

Me I will always have health insurance.

Mouth sores and other medical adventures

I never really had a problem with mouth sores. Until chemo that is. For those of you who are uninitiated, think canker sores.Ouch

During chemo, I was lucky enough to end up with mouth sores fairly frequently for the first few months, until my protocol changed to Taxol. My oncologist prescribed what is known as ''Magic Mouthwash" which his mixed by the pharmacist. Until that point, I never realized that the pharmacist at Walgreens or CVS would mix things to order in this day and age. I was under the mis-assumption that everything came out of a prepared bottle and was just resorted and relabeled.

But I digress. During chemo, I enjoyed Magic Mouthwash to solve my mouth sore issues. So why is she blogging today about life six and 1/2 years ago you ask? Because I am now on Methotrexate for my RA and it causes mouth sores. I have two on the tip of my tongue. Ouch.

So Wednesday afternoon I went to see my rheumatologist. She prescribed Magic Mouthwash for my then one mouth sore. I asked what is in it and found out they usually prescribe a combination which contains Benadryl, lidocaine (pain), Maalox (coating properties), and an anti-fungal. I said I am allergic to Benadryl. She had to find a combination without Benadryl.

She said she would have it, and another new prescription, called into the hospital pharmacy so she could communicate directly with the pharmacist. I had another test and then stood in line at the pharmacy to find out that my prescriptions had not even made it to the pharmacy yet, never mind be filled. They called the doctor's office and found out that the nurses had a question on her notes and had to wait until she was done with her next patient. I said fine, please have them sent to m y local pharmacy and I'll pick them up later.

Two hours later, I called the pharmacy and they did not have the prescription yet, only another one which I decided to pick up in the morning. But it was too late to call my rheumatologist back to find out about the missing 'magic'. And my mouth sore still hurt.

Yesterday morning I was back on the phone with the doctor's office. It was a computer glitch the prescription was in the system but the doctor hadn't signed off on it for some reason so it could be sent to the pharmacy. A second mouth sore started to emerge as well.

At 2pm I called the pharmacy to see if the magic was ready. No it wasn't. I called the doctor back and the secretary said it had been sent to the pharmacy but my insurance company wouldn't cover it because it contained Maalox which is available over the counter so it had been punted back over to my doctor for another revision and signature.

At 4pm I called the pharmacy again and found out they had just received the prescription and wanted an HOUR to fill it as they had to mix it. I went home and got comfy because my feet hurt and my tongue hurt, with its second mouth sore. They called 30 minutes later to say it was ready. Grr.

I got back in my outdoor clothes to go back to the pharmacy and picked it up. The second I walked in the door, I grabbed a spoon and swished it around my mouth. Relief finally!

After a lot of red tape, my tongue stopped hurting... That was just one day in my life as a patient. And my tongue still hurts when I eat anything.

Affordable Care Act and Cancer

Yesterday, a bunch of us breast cancer people were together at a lunch. One of the topics of conversation that came up was what portion of breast cancer treatment would be covered by health insurance. For example, would a mastectomy be covered fully or not. We discussed it and we all came up with we really didn't know and needed more research.

Not a good answer.

And then this morning I read this article on access to cancer care under the ACA. It is a disappointment.

Yes the ACA has meant that insurers can no longer drop patients with cancer diagnoses nor are there lifetime caps in coverage. However, there is no guarantee that you will be able to get specialized cancer care.

This is because while under the Act, insurers must meet specific requirements, they do not have to allow you access to official cancer centers.

"...patients are discovering that many plans are limited to narrow networks of doctors and hospitals. Some large cancer centers don’t accept any of the insurance plans that are available through the Health Insurance Marketplace.

According to a 2014 study commissioned by the Leukemia & Lymphoma Society, many insurance plans available through the healthcare exchanges did not provide coverage for treatment and services at cancer centers with National Cancer Institute (NCI) designation. A 2014 Associated Press (AP) survey also found limited access to specialty cancer care. Of the 19 nationally recognized comprehensive cancer centers that responded to the AP survey, only four were included in all the insurance plans offered on their states’ exchanges."

However, do not forget your local oncologist. You may not need a specialty cancer center. I don't go to a specialty cancer center and I'm doing fine. I actually like having my oncologist and primary care and rhuematologist and endocrinologist and pain management and all the other doctors all in the same place. They talk about me when issues arise.

However if I hit cancer #3, I would probably make a trip to a specialty cancer center. (But that's what I said about cancer #2....) But I digress, the ACA act is protecting is us a good deal and helping prevent medical bankruptcies. And it may not cover everything. But I think I am happy with the ACA.

So are you an inpatient or an outpatient?

The hospital and Medicare get to decide. Not your doctor who is actually treating you.

I found this pretty appalling. Medicare patients can be in the hospital for DAYS and be called and an outpatient because they are only being 'observed'. They get the same care as everyone else. But then they get a big fat bill if they were an outpatient.

Their doctor can even admit them and make them an inpatient but then the hospital can change it back to outpatient. Hospitals like this because they get reimbursed more that way.

"Medicare originally intended observation care as a way to give doctors time to evaluate whether a patient should be admitted to the hospital or is stable enough to go home, usually within 24 to 48 hours. But hospitals are increasingly keeping patients in observation status longer: 8 percent of Medicare recipients had observation stays longer than 48 hours in 2011, up from 3 percent in 2006.
Apparently the government can tell by looking at a rule book to figure out how sick you are, not but diagnosing you and reading your chart. Or, God forbid, even talking to you.

That increase may partly be a response to aggressive reviews of hospital billing practices in recent years. Medicare contractors have demanded refunds from hospitals that admit patients the government believes should have been treated as observation patients or outpatients. Medicare pays hospitals less for those patients."

And also hospitals are now rated on their readmission rates. If you aren't admitted the first time, you are not readmitted later on.

"Toby Edelman, senior policy attorney at the Center for Medicare Advocacy in Washington, D.C., said she believes hospitals also could be trying to avoid readmission penalties, which are assessed if too many patients are readmitted within 30 days. Harold Engler, for example, went home after five days, grew sicker, and then returned for another five-day observation stay. If he had been an inpatient, he would have counted as a readmission within 30 days."

Hospitals claim they are working on it because they computer tells them what to do. The computer even knows more than the government:

"Dr. James Hart, who heads a Beth Israel Deaconess committee that makes sure the hospital follows Medicare rules, said he could not comment on Engler’s case. But he said the hospital uses a sophisticated computer program that tries to match patients with the correct Medicare designation based on their illness and the intensity of hospital services required. “We are very focused on getting the level of care accurate,’’ he said."

Medicare knows this is a problem and even has created a brochure on this telling patients the difference. But if you are sick in bed, do you really care about semantics? No.

"Case managers generally inform patients of their status, especially if they require skilled nursing care, he said. But that doesn’t mean patients digest the information, at a time when they have so much to focus on. “Part of the challenge from a patient perspective is there really is an information overload,’’ Hart said."


You just want to feel better and go home where you can be in your own bed eating real food instead of the crappy hospital food they serve.

I knew Medicare had its issues but I didn't think it was out to impoverish seniors. I thought it was supposed to be the other way around. Clearly some changes need to be made here.

Update: 8/30/13 - One of the former heads of Medicare wants the rule on observation to be abolished.

Some lessons to learn

We can learn some lessons here. In the US we are busy being annoyed with the new healthcare system or happy to use it. But we have it and have to learn to live with it or legislate it into something else.

I did not know this but Germany has a very similar health care system with the same issues - trying to reduce costs. We are busy thinking we are doing something new but we aren't. Except for a few differences, it already exists pretty much.

I am not saying the German system is perfect. But if you read about it, there are some key similarities.

My point is that while we are trying to reinvent the wheel we can learn from others who have already done so.

Parity

Parity in health insurance is required. This week Washington announced that Mental Health a/k/a behavioral medicine would be treated the same under Healthcare Reform as physical health issues. That's good but there is still a ways to go for full parity:

• Dental coverage - why do we have such crappy dental coverage? Its not just your teeth needing cavities or replacements but the state of your mouth and tongue and potential tumors or other health issues.
• Eye care - why can I only get my eyes checked every two years by a limited number of providers? The doctors want me to get my eyes checked yearly but the insurance company only covers every two years.
• Oral parity - this is when oral drugs, such as chemotherapy, are covered under the pharmacy benefit but if done as an infusion, which costs a lot more, they are covered under the medical care benefit. A patient could pay $20 for a copay for chemotherapy infusions that costs the insurance company $12,000 but $1000 for their share of an expensive chemotherapy pill.
• Equal coverage for birth control and impotence issues.

We will not have full, equal coverage until all these are covered.

How good is your health care?

Now that we have a national healthcare system in place, a recent study on the quality of healthcare available in the US, state by state. They looked at things like dental care and tooth loss, obesity, death rates, and more.

I am lucky/happy to live in Massachusetts which has many good hospitals and doctors and had a mandated healthcare system for nearly 10 years. I have always thought I have received good health care over the years.

I read through the article and was appalled on some level at the level of health care available in differing states in this day and age. But then I read through the full report (17 page pdf) and was generally impressed with the improvements in the past five years.

So overall, while some parts of the country still do not have access to quality medical care, improvement is visible.

And the costs just keep piling up

Back at my first cancer adventure in 1981, my father advised me never to let my Blue Cross health insurance lapse because going forward with a pre-existing condition, I could always lose my health insurance. And that was something I could not afford. For quite a few years, until MA changed the law regarding pre-existing conditions, I would often pay for my own private health insurance to ensure I never lost Blue Cross. Even if my employer was offering another plan, I would pay for my own. That wasn't cheap.

Then I had more medical adventures and got to know the surgery department and ER a few more times. I kept my Blue Cross insurance and kept on paying. From time to time I would have a job which offered Blue Cross insurance. Then the law changed and I could stop that.

In the past 7 years since my second cancer adventure, I average a minimum of 50 doctor appointments each year. We max out our out of pocket coverage each year as well. One year a friend convinced to try to keep track of what insurance paid vs what I paid. No contest. I paid a tiny portion of the hundreds of thousands paid by the insurer.

So I am verification of a new study showing that after cancer, patients face rising costs of health care. All of a sudden you get more doctors and more appointments and everything needs to be checked because of your medical history, blah, blah, blah. And there are all the health issues caused by side effects of treatment that may never go away. The lost productivity costs because you have to go to the (damn) doctor or don't feel well enough to work that day. The list goes on.

But now it looks like a cancer diagnosis is financially as well as emotionally and physically taxing.