This Media and Legislative Intelligence Report Will Serve As an Overview of the Health

Tuesday, April 5, 2016

Summary:

This media and legislative intelligence report will serve as an overview of the health care landscape for sickle cell disease in the United States. Major legislation will be included from the United States, and major headlines related to health care, the FDA, PhRMA, opinion, and research will be included as well.

Industry News:

New Rules on Tax Inversions Threaten Pfizer-Allergan Deal
By Not Discussing Cost Issues, Doctors, Patients May Miss Chances To Lower Out-Of-Pocket Expenses

Legislative:

Alexander: Cures bill deal could be reached by end of the week

Blogs:

The invisible pain people with sickle cell anemia go through every day

Summaries:

Industry:

New Rules on Tax Inversions Threaten Pfizer-Allergan Deal(The Wall Street Journal, April 4, 2016)

Allergan’s shares dropped 19 percent in after-hours trading Monday, after the U.S. Treasury announced newrestrictions on corporate inversions, which were tougher than anticipated. Pfizer’s shares increased 0.9 percent in after-hours trading.Several dealmakers said the administration’s announcement seemed pointed at thecompanies’planned merger, which would create the world’s largest pharmaceutical company.

2.By Not Discussing Cost Issues, Doctors, Patients May Miss Chances To Lower Out-Of-Pocket Expenses (Kaiser Health News, April 4 2016)

Talking about money is never easy. But when doctors are reluctant to talk about medical costs, a patient’s health can be undermined. researchers noted two ways in which doctors dismissed patients’ financial woes. They either did not acknowledge the concerns patients expressed or only half-addressed them.

Legislative:

Alexander: Cures bill deal could be reached by end of the week (The Hill, April 4, 2016)

Senate Health, Education, Labor and Pensions Chairman Lamar Alexander (R-Tenn.) said Monday that a medical innovation bill, which seeks to speed up the Food and Drug Administration’s approvals of new drugs and devices and boost funding for medical research, could be ready for the Senate floor as early as next week.

Blogs:

4.The invisible pain people with sickle cell anemia go through every day

Sickle cell anemia is no joke. It’s a condition in which the sufferer doesn’t have the right amount of healthy red blood cells to deliver enough oxygen to the body. Believe me, every single day is battle in a war that will probably never end. It’s a strange and awkward phenomenon when your own body wages war against you.

Alexander: Cures bill deal could be reached by end of the week

The Hill- News, April 4, 2016

Senate Health, Education, Labor and Pensions Chairman Lamar Alexander (R-Tenn.) said Monday that a medical innovation bill could be ready for the Senate floor as early as next week.

The bill is the Senate’s companion to the House-passed 21st Century Cures Act, which seeks to speed up the Food and Drug Administration’s approvals of new drugs and devices and boost funding for medical research.

“The House has passed it with a big vote, the president's interested in it, and we're nearly through with our work, so let's put it this way: I think it's likely to be ready for the floor by the end of the week, or shortly thereafter,” Alexander told The Hill. “Whether it comes to the floor is up to the majority leader.”

The main obstacle to a deal has been finding a way to pay for new mandatory funding for medical research at the National Institutes of Health (NIH), which Democrats have made a dealbreaker.

Negotiators are still working out funding related issues, so nothing is certain and a deal is not yet in hand. The bill is already months behind its original schedule.

The health committee has its last in a series of markups scheduled for Wednesday on other parts of the package, where it will consider the final batch of a range of FDA reform bills.

Asked if a deal on NIH funding could come by the end of the week, Alexander said, “Possible, but we’ll see.”

"We're moving along, we haven't come to an agreement yet, but Senator McConnell has told me that if a bill is important, affects a lot of people, and the president will sign it, that he'll put it on the floor, and I can't think of a better candidate than this one,” Alexander said, referring to Senate Majority Leader Mitch McConnell (R-Ky.).

Alexander has given some hopeful signs to Democrats about his openness to mandatory funding, which he wants to be targeted to specific initiatives such as Vice President Joe Biden’s cancer “moonshot” and President Obama’s “precision medicine” initiative for individualizing treatments.

Alexander said he is working with the ranking member, Sen. Patty Murray (D-Wash.), as well as the administration. Because funding offsets are likely to come from outside the health committee’s jurisdiction, Alexander said Senate Finance Committee Chairman Orrin Hatch (R-Utah) is also involved.

Negotiators have not yet settled on a dollar amount for the NIH funding, but Alexander indicated it could be close to the roughly $9 billion over five years that was in the House bill.

“The House was at $9 billion,” Alexander said. “We haven't agreed on a number, but I think what we need to recognize is we have to approve something that the House will pass and the president will sign.”

Alexander, Murray and leaders of the House’s bill met with Biden last month to discuss the legislative effort and how it could provide funding for the cancer moonshot.

The Senate has had slower going since the House passed its bill in July.

By Not Discussing Cost Issues, Doctors, Patients May Miss Chances To Lower Out-Of-Pocket Expenses

Kaiser Health News, April 4, 2016

Talking about money is never easy. But when doctors are reluctant to talk about medical costs, a patient’s health can be undermined. A study published in Monday’s Health Affairs explores the dynamics that can trigger that scenario.

Patients are increasingly responsible for shouldering more of their own health costs. In theory, that’s supposed to make them sharper consumers and empower them to trim unnecessary health spending. But previous work has shown it often leads them to skimp on both valuable preventive care and superfluous services alike.

Doctors could play a key role in instead helping patients find appropriate and affordable care by talking to them about their out-of-pocket costs. But, a range of physician behaviors currently stands in the way, according to the study.

“We need to prepare physicians to hold more productive conversations about health care expenses with their patients,” said Peter Ubel, the study’s main author and a physician and behavioral scientist at Duke University.

The researchers analyzed transcripts of almost 2,000 physician-patient conversations regarding breast cancer, rheumatoid arthritis and depression treatment. They identified instances in which patients suggested that the cost of care might be difficult to afford and assessed how doctors responded.

Overall, researchers noted two ways in which doctors dismissed patients’ financial woes. They either did not acknowledge the concerns patients expressed or only half-addressed them. For instance, if a patient commented on how expensive a drug was, the doctor might ignore the comment entirely or might suggest a temporary solution — like a free trial — without exploring long-term strategies to address the issue.

And, without such a long-term plan, patients may eventually stop taking the medication, or take it irregularly. That can harm their health, and even send them to the hospital.

The study doesn’t measure how often doctors dismissed patient concerns — because, the researchers wrote, they didn’t know how often those dismissals led to people actually foregoing needed treatments.

Still, Ubel said, it is clear doctors are not talking to patients about these expenses. He pointed to a separate analysis of those same conversations, which found that doctors discussed medical costs with patients about 30 percent of the time; and, in only about 40 percent of those discussions did doctors and patients brainstorm about ways to make medication more affordable.

“A majority of [physicians] — they don’t talk about costs,” he said. “When they do talk about it, they don’t talk about it productively.”

Why do physicians hesitate? For one thing, they aren’t used to discussing cost barriers, and many think it’s inappropriate to bring up money at all, Ubel said. When he lectures on the subject, he always encounters people who worry discussing finances will “contaminate the doctor-patient relationship.”

Plus, doctors haven’t been taught to listen for patients’ pocketbook concerns. If a patient comes in with heartburn and indigestion, a good internist will immediately start probing for signs of coronary disease, Ubel said. By contrast, physicians aren’t primed to pick up on cues that patients may face financial strains.

“If we had that on our list to be aware of, we’d pick up the cues. If we don’t, it’ll be right in front of our eyes, and we’ll miss it,” he added.

The idea of patients acting as consumers — weighing cost and shopping for the best health care deal — is still relatively new, the study notes. As it becomes more commonplace, patients may push doctors for more help in making cost-based decisions, Ubel said.

That said, navigating a patient’s financial circumstances and medical needs in the course of a 15-minute visit is tricky, said Jonathan Kolstad, an assistant professor of economic analysis and policy at the University of California, Berkeley. Kolstad wasn’t involved in the Health Affairs study but has researched how medical costs affect people’s decision-making.

“It’s not as though, ‘Oh, it’s just consumers can’t figure it out.’ Doctors don’t know,” he said. When it comes to figuring out what a drug will cost, “doctors are in the same boat.”

The Invisible Pain People with Sickle Cell Anemia Go Through Every Day

Elite Daily, April 4, 2016

Thirty years into my sickle cell anemia diagnosis, it’s safe to say I’ve lost a lot. From the organs in my ailing body to friends, businesses, money and more, I’ve accumulated a nice streak of losses that makes even the 2014-2015 New York Knicks feel like NBA Champions.

The thing that makes this disease particularly cruel is its invisible nature. It has this uncanny ability to keep its suffers silent as it expertly conceals the damage it does to the human body and even the mind. The pain alone will drive you mad.

Over the years, people have tried to quantify the pain of sickle cell anemia, which actually varies depending on the issue of the person diagnosed. Despite the excruciating physical pain sickle cell anemia can cause, most people are unaware about the mental pain as well.

Do you know how they say ALS only attacks the body and leaves the mind intact? Well, sickle cell anemia doesn’t discriminate. Everything is fair game, including the body, the mind and the organs.

The sheer greediness of this disease leaves its sufferers more vulnerable than ever. It condemns them to a life of anxiety, and it chokes them like razor wire.

Losing your mind isn’t difficult when you suffer from sickle cell anemia. This is especially true when you consider yourself a lifelong learner and enjoy the journey of acquiring more knowledge. But, sickle cell anemia put a stop to that for me.

Although you won’t see me waving a white flag, the side effects of these countless medications slowly start to hinder the learning process. Coming to terms with this fact was devastating to me. The anxiety of the physical symptoms had already started to take a toll on my mental health, but watching my ability to learn go was the straw that broke the camel’s back.

Living with sickle cell anemia means living with a lot of pain. It can linger for days, and sometimes, it can even be around for months. That’s where the opioid pain medication comes in. Most of us sufferers need to take it around the clock, which is brutal for both our bodies and minds.

It has slowly and continually debilitated my brain power. I no longer have a photographic memory. My ability to retain information is poor, and I’m still popping a lot of pills.

Sickle cell anemia patients are still dying young, and the ones who are alive are suffering in silence. I’ll adapt and pivot. I’ll still learn as much as I can. But, I’ll also rededicate myself to teaching and educating the world about the travesty that is sickle cell anemia.