Devastating Impact For Cancer Research- Important Voices Say Cancer Patients Need to Understand What’s At Stake in The Build Back Better Legislation

The Biden administration's Build Back Better package, approved by the House of Representatives last month, and now heading to the Senate, promises to curb prescription drug costs by allowing Medicare to negotiate prices for the top drugs. The provision, one of many in the proposed bill, seems reasonable on the surface. But the pharmaceutical companies that fund this research, and the community oncologists who deliver 80% of the cancer care in America, say what's not being fully considered is the impact that the legislation will have on the research, development and delivery of cancer drugs and care.

"I’m really concerned about Build Back Better, because I think people aren’t aware of what could actually, and is about to, happen. If the government is not gonna pay for innovation you’re going see investment go elsewhere,” says Christi Shaw, CEO of Kite, and one of the leading figures powering ground-breaking advancements in cancer today.

Does The Build Back Better Drug Pricing Proposal Endanger The Treatment Revolution?

SurvivorNet was on a Zoom call with Shaw to talk about the remarkable results her company just released looking at long term survival using a type of treatment called CAR T-cell therapy for people who have the diffuse large B-cell  (DLBCL) version of non-Hodgkin lymphoma.  CAR T works by taking cells that help fight cancer out of the body, supercharging them in a factory, and then reinserting the into the body. In the latest research, nearly half of DLBCL patients treated were still alive five years after receiving this therapy. This is a group of people that previously had an average life expectancy of only 6 months. Oncologists are saying the results are truly transformative and will change how patients are treated.

Shaw says this kind of remarkable progress is in danger because less financial incentive for drug makers will lead to less funding for new drugs. It can cost a billion dollars or more to develop a cancer therapy, and as any researcher, or pharma executive, will tell you, most still fail.

Remarkably, Shaw told SurvivorNet that none of the pharmaceutical companies which have developed CAR T-cell therapy have turned a profit yet on these drugs.

"There's billions of dollars going into the cell therapy world 120 cell companies," says Shaw, "tons of money going into investment, because it takes a lot of money to bring it forward. Nobody’s made money on cell therapy yet. It's all just been investment, investment, investment."

Why CAR T-Cell Therapy Is So Exciting

How Can Negotiated Prices Be a Bad Thing?

“We actually have government now saying we’re going to negotiate prices,” says Shaw. “And if you raise your prices too much, you’ll get a 95% penalty. So, people say, well, shouldn’t you be negotiating prices? Well, it’s not really a negotiation when the, the government says, they’ll, you know, give you a 95% cut if they don’t like your price. So, it is gonna affect patients. The innovation does come a lot from the U.S. And I’m just afraid people don’t understand the implications of what’s about to go down.”

Shaw is not just assessing the BBB plan from a business standpoint; she knows the patient side first-hand. Her mother died from breast cancer, and Shaw took a year off from her job to care for sister, Sherry, who died at age 53 from multiple myeloma, a rare type of blood cancer.

Proposed Changes: The Details

The Build Back Better plan would allow Medicare, starting in 2025, to negotiate prices for 10 drugs, including those used by oncologists. By 2028, Medicare would negotiate prices for 20 drugs. These drugs would be selected from among the 50 drugs with the highest total spending and to all insulin products. An upper limit on price would be set with the goal of saving money for Medicare, taxpayers and patients.

However, oncologists, physician offices and hospitals would likely see a marked decline in revenue, and the curtailing of funds would have a ripple effect of repercussions, including causing community clinics to shut down and, more importantly, seriously stalling progress in the quest for finding new drugs to treat cancer.

In addition, an excise tax would be levied on drug companies that do not comply with the negotiation process. Manufacturers would face an escalating excise tax on total sales of whatever drug is in question, starting at 65% and increasing by 10% every quarter to a maximum of 95%, a prohibitively pricey penalty.

Community Oncologists Say New Drug Pricing Plan Will Hurt Patients 

It is not just pharmaceutical companies objecting to the new provisions. In addition to the funding that the drug industry claims will dry up for research and innovation, an association of local cancer doctors called the Community Oncology Alliance says that the Build Back Better drug pricing proposal will have "serious unintended consequences" for cancer patients as insurance payments for cancer care will be "slashed by close to 45%.” The association asserts this will result in cancer clinics closing, reducing access for people who need care.

80% of Americans receive their cancer treatment in a community medical practice, rather than a major academic cancer center.

How Cancer Patient Can Get Financial Help Now

There is very little debate that the financial burdens on cancer patients and the sheer cost of healthcare is a major stressor for too many families. The debate going on for the future has less relevance for those among us who are sick and need help now.  There aren't always good answers about how to pay the bills and how to get lifesaving drugs to people who can not afford them. Below are a few helpful pieces of guidance:

• Patient Assistance Programs: Physicians and the navigators who help patients say that when it comes to the cost of a specific cancer drug or treatment, the assistance programs offered by pharmaceutical companies can offer help to those of us who can't afford the full cost. Most big drug companies have programs like these in place. While there may be maximum income thresholds, it can be useful to simply ask. In the case of newer medications, drugmakers often will make exceptions as they want as many people as possible taking their products.
• Social Workers: These folks work in hospitals and their job is to be your advocate. Ask for your social worker’s contact information they can help push insurance companies to pay for treatment and help navigate the terrible frustrations some cancer patients have with bills for treatment.
• Nonprofit and advocacy organizations. There are some great programs in place to financially support those who can't pay for the costs associated with their care. The Lazarex Cancer Foundation, for instance, reimburses patients for the costs associated with clinical trial participation, and other organizations such as the American Cancer Society and the Cancer Support Community may help patients secure lodging and travel for their care.

"I think it’s on everybody’s mind,” says Kite’s Shaw. What people really want to know usually is how much is it going to be out of my pocket? That's where we need to remove the burden from a patient and make sure that patients have access regardless of their financial situation."

That's not to say Big Pharma isn't hoping for a payoff. These drugs are developed because people see a return and a possibility for profit. But it's the end result groundbreaking, life-saving drugs that matter above all. Shaw's argument is if you spend a million dollars on something, the cost of this expensive therapy happens up front. It's value-based medicine.

"Let’s start paying for health outcomes," says Shaw, “because the acquisition price conversation is one that doesn’t help patients."

Car T-Cell Therapy Step-by-Step 

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