Seven Days in November:
Healthcare and the Road Ahead

As if an acrimonious campaign and stunning election were not enough, the past seven days have been rife with anxiety and fear that the Republic is crumbling. In healthcare, the Affordable Care Act (ACA), Medicare, Medicaid–and you name it–many federal entitlements– are at risk of evisceration, with nothing substantive to replace it intended or on the drawing board. How will people get and afford healthcare under this order with no safety net?

Today, PatientPOV returns to its roots and gets back to the work of uncovering the gaps between the powers that be and the people. Any of us could be patients and caregivers at some point in our lives. Some of us have had terrible illnesses, been taken up with caregiving, and as a result, experienced economic hardships and disruption in work.

In the past few days, I began to talk with people in red states who are worried about the future of healthcare as the new order frames it. It’s premature to put it into a story, but I will write about it soon.

During the campaign, Trump didn’t have much of a health plan unless you want to call promoting health savings accounts a platform. But health savings accounts are largely limited to people with disposable incomes who can shelter money for health expenses. It’s not insurance at all. Clearly, health savings accounts were the bare minimum that alone, would not fly, post-election.

In the last seven days, Trump and Republican leaders sure have amplified their intentions. Now we are hearing about the dismantling of popular programs that have insured millions or provided a a safety net for many others. It’s overwhelming to consider the programs Trump and Republican leaders are earmarking for extinction. But I hope to air here people’s discontent about the proposed overhaul of healthcare as we know it.

If you’ve got something to say about this, please put it in the comments below. To quote Yogi: “It’s not over till it’s over.” It’s been seven days. Stand up now. Get ready for the long haul. It’s the only way forward.

 

No More Struggling to Find Co-Pay Dollars for Contraception!

Written by Keely Monroe, Raising Women’s Voices

This blog was originally posted for the What’s in it for Women? campaign. To learn more about the campaign and the wins women get from the new health law, please visit www.CountDowntoCoverage.org

Today is a day for millions of women like me to celebrate!

For the first time, our country is requiring all new health insurance plans to cover contraception – and do it without charging us co-pays and deductibles. It’s all because of the women’s preventive services provision of the new health care law (the Affordable Care Act). 

This is a big deal for me as a young woman who uses birth control because it hasn’t been the right time for me to become a mom. As a young professional living in Washington, DC, where the cost of living is high, I have found that the monthly co-pays for my contraceptives take a real bite out of my budget.

I am relieved and thankful that starting today, the health care law is going to begin to change all that for me and for all those women struggling to find co-pay dollars for care we can’t do without!

This new requirement will apply to coverage for a wide range of contraceptive methods – including birth control pills, IUDs and even tubal ligations that are popular with women in their 30s and 40s. It also covers the contraceptive counseling visit with your doctor to figure out which is the best method for you.

When will this great new coverage requirement go into effect for you? It applies to all new health insurance plans beginning today, but will go into effect with the beginning of your new “plan year.” So, student health plans, which generally start with the new school year in late August or early September, are likely to be the first to include this benefit. Other new plans may not incorporate the change until January, which is typically the start of health plan coverage years.

What about existing health insurance plans? They will have to comply with this requirement as soon as they make enough routine policy changes to be considered “new” under the health care law. It’s estimated that could take until 2014 for some existing plans. Call your health insurer or your employer’s human resources office to find out what you will get this great new coverage.

So this is what’s in it for women: Affordable contraception, well woman visitsimportant screenings and counseling for intimate partner violencecounseling for sexually transmitted diseases (including HIV), breastfeeding equipment and counseling and diabetes screening when you’re pregnant.

So thanks, health care law, for helping me and millions of women to stay healthy!

Raising Women’s Voices is a national initiative working to ensure the promise of health reform is fulfilled for women and our families. It is a collaboration of three national organizations: the Black Women’s Health Imperative, the National Women’s Health Network and the MergerWatch Project — and state-based women’s health organizations in 21 states.

 

Pre-ACA, Insured Face Exorbitant Costs.
With Accountable Care Act, People Will See Caps, Save $$

Vast numbers of Americans do not understand how the Affordable Care Act will make their expenditures for healthcare a heck of a lot more affordable. I am talking about the 80% of American voters who have insurance now, who misguidedly think it has them covered. Medical bankruptcies are up and they are happening to people like you and me because of unanticipated, unaffordable health expenses.

This week, I am sending money to a friend with breast cancer who has four children and insurance. Her friends are planning a fundraiser. She has had 6 surgeries and she can’t keep up.  She’s got breast care drugs that she cannot afford and no lifetime or yearly caps. I know someone else who delayed investigating a breast lump because she had to get herself insurance first. Now she’s stage IV and providers are after her daily for $$.

It’s not just cancer, although it is the first thing that often comes to mind. It’s mental health care that is not available for many Americans. It is what happens when someone suddenly has a debilitating stroke or progressive illness, or becomes disabled. Or drugs for HIV that suddenly become cut from the federal budget and thousands of HIV-positive Americans are without drugs. Annual and  lifetime caps, an end to pre-existing conditions, and insurance exchanges, and so much more,  have to be made plain to everyone.

It’s time to step up sharing specific examples of how people fare pre-ACA versus post-.  We need to move beyond generalities and intangibles to real-life hardships.  Social Security and Medicare, also faced early challenges and a skeptical public. I hope to share more stories here of real people who are going broke, barely staying alive because of current health policies. Many are insured, but can’t keep up.

If you are bored and feel like you have heard these vignettes many times before, make a contribution for the public good: try these real-life stories out on people who think catastrophic expenses could not happen to them. There are thousands more stories like this. Sadly, it is not unlike the AIDS Quilt.

We are in a precarious period. I urge you to get angry and seek out these stories. You won’t need to look too far. Get these stories around. RT them, tell them at parties. Let’s be sure the Affordable Care Act and all its essential public health infrastructure stand.

If you’ve got a story to tell, share it in the comments. If it’s too long, write me at “patientpov” at “gmail dot com.”

Is There An Oncologist In the House?

Imagine, if you will, that you have early (stage 1b) lung cancer, that you think you have good insurance, and that you cannot find an oncologist to follow you. That’s the story of a 55-year-old man, who asked that I call him “LC1.”

About one year ago, LC1 had a lung biopsy at an academic teaching hospital. The surgery “got it all,” according to LC1’s surgeon, and further treatment was unnecessary. That meant, chemotherapy was not in the cards and that he would be followed with regular scans to be certain that there was no recurrence. LC1 remained in the hospital for about a week to recuperate. Just moments after they took his chest tubes out and LC1 was preparing to go home, an oncologist came to his bedside, leaving this nugget: “I’ll see you in a few weeks. We need to talk about chemotherapy.”

LC1 was astounded. How was it that he was there for days on end and he and his family thought that the worst was over? LC1 could not comprehend why his surgeon and oncologist were on a completely different page. As he learned later, his cancer was categorized as stage 1b nonsmall cell lung cancer, a category of early lung cancer where there is disagreement about the benefits and risks of chemotherapy. The chemotherapy regimen is rough.

Initially, LC1 felt energized about going home. Now, after the oncologist sauntered in and out of the room urging chemotherapy, LC1 became rapidly depressed. He could not shake it in the first few weeks after going home. What was notable about the oncologist’s comment was that he barely put it out there and then he left the room.
LC1’s insurance paid for a visiting nurse to come to the house. She taught him to walk again and changed his dressings.  He took some pain medication. When he could, he did what he could to learn about lung cancer chemotherapy.

No mental and emotional preparation seemed to be enough for their return visit to the first oncologist. He was dogmatic and warned LC1 and his family that if he chose not to have chemotherapy, he would be flirting with death. The visit was difficult.

A Second Opinion in the Same Town

A close friend urged them to get a second opinion. Initially they balked at the possibility of seeing anyone else. It felt like information overload and LC1 could not imagine how you juggle more possibly conflicting opinions.  With the help of a friend in the medical field, LC1 set up his appointment for a second opinion and also considered switching to the second oncologist at a different hospital than where he had his lung biopsy. With the appointment in hand, LC1 and his family began reading everything that they could find on the pros and cons of lung cancer chemotherapy. LC1’s brother joined a lung cancer support group on line and asked questions of people who had undergone lung cancer chemotherapy.

When LC1 went for his second opinion to a highly regarded lung cancer program, he was relieved that the second oncologist did not scream at him to have chemotherapy, or else face the consequences. He also took comfort in a fellow warmly urging the family to not just consult with them, but hopefully transfer all of LC1’s care to them.
In comparison with the first oncologist, the second one explained the pros and cons of the lung cancer chemotherapy regimen that he would choose for LC1. What was left outstanding at the end of the visit was the second oncology and pathology team’s review of LC1’s slides and medical clearance before starting chemotherapy.  But one comment took LC1 by surprise. Near the end of the visit, the oncologist asked: “What did the first guy say?” When LC1 told him that he recommended chemotherapy, the second doctor said emphatically: “Well I am going to say the same thing.”

LC1 wondered why it mattered what the first oncologist said, but he put that aside. LC1 admired the way that the oncologist spoke with him and thought that he probably would switch over to him. He began to request his slides so that the second group of pathologists could look them over. (This is frequently the case when a second group is evaluating you.)
A few weeks later, LC1 returned to the second oncologist. He had had good days and bad ones. He had read of people who felt that they got through the rough chemotherapy and days when he read about side effects that made him cringe.

The Search for a Follow-Up Oncologist Continues

His return visit to this oncologist took the wind out of his sails (as if the stitch in his side from the lung biopsy was not enough). To his surprise, the oncologist told him that because of several medical criteria, LC was unsuitable for treatment. Tumors like his did not respond well to the specific chemotherapy agents. Also, his personal biology made him more vulnerable to toxicity.  LC1 was also an unlikely candidate for any cancer clinical trials because his unique biology made him unsuitable.

What really flabbergasted him, though, was what followed. The oncologist told him flatly:“What this facility is about is really about treatment.” Since LC1 was not a candidate for treatment, the oncologist said: “Why not go back to the oncologist whom he saw first?”LC1 was dumbfounded. Can facilities or doctors just tell you to leave, that they won’t follow you? Is it all about chemotherapy fees, big business, or suitability for clinical trials? Was this ethical? How could this be acceptable?”

LC1 entered a dark period. He no longer had an oncologist and it was unacceptable to return to the first fear-mongering oncologist.  He and his wife did not know where they were. Some of LC1’s first impulses were to just screw it, look into alternative and complementary medicine. Mainstream American medical system in this large city had nothing to offer them. LC1’s friend asked a cancer expert in another state for recommendations. Somehow, something had to happen.

Fortunately, LC1 got a name from an out-of-state oncologist of an oncologist who was highly regarded. This American city has a huge number of oncologists. The system does not need to train more. A few weeks later, LC1 went to see oncologist number 3. For the first time in this saga, LC1 thought that he had finally stumbled upon an oncologist with whom he could work. The oncologist was fine following him and offering no chemotherapy. LC1 had his follow-up scans done at the new facility on the schedule that is widely used across the United States. Now in good hands, LC1 and his family relaxed.

Then, just before their second visit with the oncologist was set up, LC1 received a letter stating that his new oncologist was leaving to do research. LC1 could be followed by a new oncologist at the same facility that LC1’s oncologist highly recommended. So 9 months after his entire lung cancer saga began, LC1 was back to square one.  He went to the new oncologist and was pleased.

Of the four oncologists that he had seen so far, LC1 liked this one the best. He was down to earth, knowledgeable, and easy to talk with. He and his family relaxed again. Then the news came:  oncologist number-four did not take his insurance.

Exactly how many oncologists, if any at this large teaching hospital in a large American city, would accept his insurance and be willing to follow him, is currently unknown.

His insurance is one thing. LC1 considered himself fortunate that each year, he had the good fortune to review what his employer presented as a “cafeteria of health insurance options.” For years, his insurance met his needs when he was well. But he has entered new terrain. Furthermore, when he next reviews health insurance options, LC1 doesn’t know whether any other plan will have oncologists.

Recently, articles have shown how difficult it is for the poor, people on Medicaid, and the uninsured to find specialists.It is unconscionable, in my opinion, that people cannot get care. This story suggests that even so-called “good”insurance may offer little protection for sick people.

Do you think doctors and hospitals should have the right to pick their patients? Have you experienced anything like this?