The last month has been full of discussion about where we’re headed as a country following the November 2016 election.
Health care policy is a big part of that discussion. There’s been much opining on what the leadership in Congress will likely be seeking to do. Right now, we are mostly faced with a huge amount of uncertainty.
Discussions of health care issues are often presented in ideological terms. But here’s the thing about cancer: once you’ve had to deal with it, you’re perspective changes. Whether you identify with Republicans, Democrats–or neither–you realize that many of the things that matter most are the same for everyone.
And nearly everyone is affected by cancer in one way or another at some time in their lives–whether it’s through their own experience or that of a loved one. Women in the United States have a 1 in 3 chance of being diagnosed with cancer during their lifetime. For U.S. males, the risk is even greater at 1 in 2 over their lifetime.
Cancer is truly nonpartisan.
So what do we do? Most of the major changes in health policy that are being discussed would require congressional action. And that is where we need to pay close attention and be ready to call or email our elected representatives and let them know our views. And that means our views on the specifics–because those specific details are what really make the difference.
For me there are three areas that rise to the top in importance, though these are by no means the only ones that need to be addressed in health policy. But having been a cancer patient, I know how critical these are. I will be watching especially closely what happens in these areas in the coming months.
Access to Standard-of-Care Cancer Treatment
The first issue is making sure that we all have access to quality health care. When I was going through treatment I was fortunate to have excellent health insurance because the costs of my care were far more than I would have been able to handle any other way. Since then, cancer treatment costs have become astronomical.
Without health insurance, access to standard-of-care treatment becomes very difficult. Yet standard-of-care treatment is exactly what anyone facing cancer–or any other disease for that matter–is entitled to.
Since the passage of health care reform legislation in 2010, roughly 20 million people who previously did not have health insurance are now covered.
For some, that’s been achieved through government subsidies which enable them to purchase health insurance. For others, preexisting conditions no longer are an impediment to obtaining health insurance. Many younger adults up to age 26 have gained coverage because they can remain on their parents’ plans. And some lower income people now have coverage through the expansion of government health insurance programs for the poor that are administered at the state level.
Any policy changes that would remove access to care for any of these groups of people would be unacceptable.
Some of those in lower income ranges who were intended to be covered through expansion of state-administered government health insurance programs are not yet covered. That’s because some states have not implemented needed measures so they can receive federal funding for these programs. Coverage for those who fall into this category also must be addressed. No one can afford cancer care without health insurance coverage–least of all those with lower incomes.
Costs of Cancer Care
The second really big issue is the soaring costs of cancer care–often referred to as “financial toxicity”– that are now hitting even those with excellent health insurance. A major part of financial toxicity is the astronomically high prices of the newer cancer drugs.
Even for patients with health insurance, when a medicine is priced at thousands of dollars per month, the required co-payments can be so high as to make the medicine unaffordable. And when out-of-pocket expenses become too much of a burden patients often skip doses or stop taking their medication altogether. Some patients are being driven into bankruptcy as a result of these costs.
Pharmaceutical companies point out that they need to recoup the costs of developing drugs, but the prices being charged seem to go way beyond that, and often don’t reflect the value that the medications really offer to patients.
Most Americans want this problem fixed. A survey conducted in September by the Kaiser Family Foundation, a nonpartisan organization focusing on national health issues, found that the vast majority of Americans–including majorities of Democrats, Republicans and independents–support several policy changes to control the cost of prescription drugs.
For example, about 8 in 10 Americans surveyed by the Foundation said they favor allowing the federal government to negotiate with drug companies to get a lower price on medications for people on Medicare, the federal health insurance program for those age 65 and over. A similar large majority also want to limit the amount drug companies can charge for high-cost drugs for illnesses like hepatitis or cancer.
Investment in Cancer Research
A third major issue is investment in cancer research. There is tremendous hope and hype around precision medicine, immunotherapies and other innovative approaches to cancer diagnosis and treatment. But most of the advances that are being discussed are either still experimental or are only helping a small minority of patients at this time.
Those affected by cancer want to see real advances that enable them to live for a long time after treatment with good quality of life. But we have very far to go to be able to ensure this outcome for most cancer patients and the only way to get there is with research.
We must continue to invest in research so we can build on the advances in knowledge about cancer that have been made and actually arrive at the effective new treatments we all want. And those dealing with metastatic cancer right now don’t have the luxury of time. We need to expedite research that will bring them the answers they need.
What Can We Do?
Right now we are faced with a huge amount of uncertainty. It’s very hard to predict how all of this will shake out. Can we expect Congress to respond to what we as Americans have said we want in surveys such as the Kaiser Family Foundation survey that ask very specific questions?
It is possible to negotiate effective, bipartisan solutions to these issues. But in this polarized political world that’s only going to happen if we demand it of our legislators. Yes, they do still need to listen to voters if they want to get reelected.
We need to watch closely, let our elected representatives know what we want and expect, and most of all: hold them accountable.
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