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ACS CAN: Drug pricing policy should prioritize patient affordability

On July 16, the American Cancer Society Cancer Action Network (ACS CAN) submitted comments to the Department of Health and Human Services (HHS) regarding proposals to reduce prescription drug costs outlined in the administration's Request for Information (RFI) regarding its Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs (blueprint). 

A number of the proposals explore cost-cutting measures in the Medicare program. These proposals include altering rules around Medicare Part D's "six protected classes," shifting some drug coverage from the Part B to the Part D program, implementing a cap on Part D out-of-pocket costs, and eliminating cost sharing for generic drugs for certain low-income Medicare beneficiaries.

A statement on the proposals from ACS CAN President Chris Hansen follows:

"Medicare changes can have a profound impact on cancer patients. Half of the 1.7 million new cancer cases diagnosed in the U.S. this year will be among people 65 or older and age is the single greatest risk factor for cancer. Affordable access to prescription therapies is essential to treating this population. 

"Currently, Medicare Part D prescription drug plans are required to cover nearly all drugs in what are known as the "six protected classes." This policy is intended to ensure the most vulnerable Medicare enrollees, including cancer patients, are able to access the drugs required to treat their disease. If these classes are changed or eliminated, Part D plans could exclude or restrict access to certain drugs as a means to reduce costs. Prescription drug indications vary widely and increasingly in cancer – with the development of precision medicine – drugs target specific mutations. Restricting formularies would leave out many unique drugs that have no alternative to treat distinct cancers. 

"Part D plans already have flexibility in how they cover drugs in the six protected classes and can use formulary tiers to negotiate better prices without jeopardizing patient access. While ACS CAN supports efforts to reduce beneficiaries' cost sharing for high-cost drugs, limiting access to potentially life-saving medications could significantly harm cancer patients. 

"The administration is also proposing to shift some drug coverage from Medicare Part B to Part D.  Currently some drugs, including cancer drugs, are covered under Part B because they need to be administered by a physician. It is unclear how these drugs would be managed in Part D without potentially risking patient safety.

"Moreover, moving some drug coverage to Part D is likely to significantly increase out-of-pocket costs for most cancer patients in Medicare. Supplemental Medicare plans—like Medigap—cover some or all of enrollees' co-insurance under Part B, but do not cover Part D expenses. Part D plans can also charge higher co-insurance for some drugs—up to 33 percent instead of the flat 20 percent under Part B. Moving prescription drug coverage from Part B to Part D may likewise increase Part D premiums as plans pass on the cost of covering more expensive drugs to consumers. 

"ACS CAN is pleased to see the administration is considering some important cost-saving measures proposed in the RFI and the blueprint that have the potential to reduce out-of-pocket costs for patients. ACS CAN supports including out-of-pocket caps on expenses in Part D. Right now, enrollees have no limit on the amount they may spend annually on prescription drugs, a situation that is especially challenging since the average Medicare enrollee lives on less than $30,000 a year. 

"Capping out-of-pocket costs in Part D is an issue of equity, as those under 65 with private insurance already have a limit on out-of-pocket costs they pay for drugs included on plan formularies. ACS CAN is calling on HHS Secretary Azar and Congress to work together to cap costs in the program in new national ads launched this week. 

"Other proposals that could help patients include allowing Medicare enrollees to use co-pay discount cards when generics or biosimilar drugs are unavailable, allowing pharmacists to tell patients when they could buy a drug for less without using their insurance, and eliminating cost sharing for generic drugs for certain low-income Medicare beneficiaries.

"Drug therapies play an integral role in cancer treatment. Providing access to affordable prescription drug therapies to all Americans, including those on Medicare, will be key to improving cancer outcomes and decreasing death and suffering from this disease." 

Read the full letter here.


  • House Energy and Commerce Committee approves palliative care bill

    On July 12, the House Energy and Commerce Committee marked up the Palliative Care and Hospice Education and Training Act (PCHETA). The bipartisan bill, which was unanimously approved by the House Energy and Commerce Subcommittee on Health last month, would increase federal research funding for palliative care, including symptom and pain management, and would establish palliative care education and training programs for doctors, nurses and other health professionals. It would also create a national public education and awareness campaign to educate patients and providers about the availability and benefits of palliative care

    A statement from Chris Hansen, president of the American Cancer Society Cancer Action Network (ACS CAN), follows:

    "Today's markup of the Palliative Care and Hospice Education and Training Act (PCHETA) by the full House Energy and Commerce Committee is another step in the right direction as we work to improve the coordination of care and quality of life for cancer patients, survivors and others living with serious illnesses. Palliative care is a team-based approach focusing on the relief of pain and suffering for individuals living with serious illnesses that aims to provide an extra layer of support at any age or stage of illness and is often coupled with curative treatment. Evidence-based studies have demonstrated that high-quality palliative care not only improves quality of life and patient and family satisfaction, but can also prolong survival.

    "In coordination with the Patient Quality of Life Coalition (PQLC), which has membership of over 40 patient, provider and health system organizations, ACS CAN has led the charge to raise awareness about the critical need for greater patient access to palliative care services, including appropriate pain management. We strongly believe the PCHETA legislation will aid in this effort by investing in pain and symptom management training for health care providers while also bolstering federal pain research efforts at the National Institutes of Health.

    "With recently released data showing nearly half of cancer patients and more than half of those with other serious illnesses have experienced barriers to accessing needed pain medication in the last two years, Congress must address the misuse and abuse of prescription pain medications in a balanced way that preserves the ability of cancer patients and survivors to access necessary and appropriate pain care. The PCHETA legislation should be a part of that effort.

    "We're pleased to see the House Energy and Commerce Committee work in a bipartisan fashion to advance this important legislation. We commend Congressman Elliot Engel (D-NY), Congressman Tom Reed (R-NY), and Congressman Buddy Carter (R-GA) for championing the PCHETA legislation and thank Chairman Walden and Ranking Member Pallone for their leadership in advancing  this bill through committee with overwhelming bipartisan support. ACS CAN is calling on the full House of Representatives to follow suit and pass this bill on a bipartisan basis in a timely manner."

  • ACS CAN Board chair hospitalized after bike accident

    Richard Deming, MD, medical director of Mercy Cancer Center in Des Moines, Iowa, credits his helmet with saving his life.

    The ACS CAN Board chair and founder of Above and Beyond Cancer, the organization that takes cancer survivors across the world to climb mountains, was riding with a group of friends near Altoona when one cyclist ahead of him collided with another rider. He said the group was traveling nearly 30 mph when he crashed into the tangled bikes.

    He told a local TV news station: "I just went up over him and launched and landed head-first." He suffered some broken bones and a concussion. "If I weren't wearing a helmet, I wouldn't have survived the crash," he said.

    You can watch KCCI's interview with him in the hospital.

    Despite his injuries, Dr. Deming said he still plans to take a group of cancer survivors to Tibet in August. He said he's been training for the mountain climb by walking laps around the central desk in the ICU.

    You can read more about Dr. Deming here.

  • ACS CAN: State bills limiting local authority could threaten future public health policies

    In the last few weeks, nine states have worked to pass bills that restrict local lawmakers’ ability to pass future innovative and proactive public health policies. 

    These bills are known as “preemption bills” because they block, or preempt, authority of lower levels of government to pass laws stronger than state law. Preemption bills are popular among groups like the tobacco industry to prevent future legislation that could impact the sale of its products. The following is a statement from Chris Hansen, president of the American Cancer Society Cancer Action Network (ACS CAN).

    “Local lawmakers play a critical role in passing and implementing proven policies to prevent and reduce cancer diagnoses and deaths in their communities. Local ordinances can often be more innovative and tailored to community needs. Recent action in several states across the country to strip local lawmakers of that role could put future progress in the fight against cancer at risk. 

    “While preemption has been a strategy of Big Tobacco for years, recent successes around proven tobacco control policies like smoke-free laws and tobacco tax increases, along with other public health policy wins like taxing unhealthy, sugary drinks, have amplified industry efforts to create barriers to passing these laws at the local level.

    “In Hawaii, a well-intended bill to fund kidney dialysis centers in the state was passed with a last-minute insertion from the tobacco industry to prohibit local governments in Hawaii from adopting proven policies to reduce tobacco use, including regulating the sale of tobacco products and e-cigarettes. Hawaii Governor David Y. Ige is not considering a veto of this bill and it will become law. Similar language was slipped into the budget bill in Pennsylvania that was passed June 22 by a supermajority and signed by the governor.

    “In Massachusetts, the tobacco industry lobbied for preemption language to be added to a version of a tobacco control bill that would raise the age of sale of tobacco products to 21, prohibit sale of tobacco in pharmacies and include e-cigarettes in the smoke-free law. ACS CAN staff, volunteers, and partners are working hard to keep it out of the final version of this bill.

    “In California a deal was struck to block local government’s ability to tax unhealthy sugary drinks in their communities. Knowing excess weight increases the risk for 13 cancers, prohibiting local authorities from passing policies to help manage weight in their communities strips them of a powerful tool to improve the health of their constituents going forward. ACS CAN is disappointed the California Legislature and governor did not stand up for the health of California residents by stopping this bill.

    “Many proven public health policy interventions used today were started at the local level. Preventing communities from working with their elected officials to pass laws that reflect their unique needs, could put future public health solutions at risk. ACS CAN will continue to monitor this activity across the country to protect public health innovation and its impact on reducing suffering and death from cancer.”

  • DUE July 6: Applications for ACS CAN's Gen2End ambassador program

    The American Cancer Society Cancer Action Network (ACS CAN) is offering a unique opportunity to engage the Millennial generation in the fight against cancer. The organization is now accepting applications for the 2018 Gen2End ambassador program. Applications are due July 6 at 5 p.m. ET

    The application and more details are available at acscan.orgAll ACS and ACS CAN staff and volunteers are encouraged to share this information with anyone who meets the criteria and may be interested.

    Six Gen2End ambassadors between the ages of 18 and 35, will be selected -- one from each of the American Cancer Society's six Regions -- to attend ACS CAN's annual Leadership Summit and Lobby Day in Washington, D.C. Sept. 23-26. The event includes a day on Capitol Hill lobbying lawmakers, training for ACS CAN staff and volunteers, and a night to honor those that have been impacted by cancer at the Lights of HOPE Ceremony. 

    ACS CAN will pay Leadership Summit and Lobby Day travel, hotel, and meal expenses for those selected as Gen2End ambassadors. Through the Gen2End ambassador program, ACS CAN seeks to encourage more Millennial volunteers to become involved with ACS CAN's work in support of public policies that eliminate cancer.

    Please contact Dana Bernson or Erin O'Neill if you have any questions.

  • Quality of Life legislation moves forward one week after ACS CAN volunteers participate in coalition lobby day

    On June 27, the House Energy and Commerce Subcommittee on Health met to markup the Palliative Care and Hospice Education and Training Act (PCHETA), a noteworthy first step in moving the legislation forward and making progress to improve quality of life for cancer patients. American Cancer Society Cancer Action Network (ACS CAN) staff and volunteers have worked for over five years to progress this legislation, which currently has 280 bipartisan co-sponsors.

    This bipartisan bill would help improve patient quality of life and access to palliative care, coordinated care that can be offered at any stage of treatment and alongside curative therapies. PCHETA would increase federal research funding for palliative care, symptom management, and pain management, and would establish an education and training program to train doctors and nurses in the medical subspecialty of palliative care, as well as educate health care providers in the core competencies of palliative care.  The bill would also create a national public education and awareness campaign to educate patients and providers about the availability and benefits of palliative care. In addition, the bill is also positioned as a policy solution to the current opioid epidemic. 

    This legislative development comes just one week after volunteers and staff from ACS CAN and other organizations participated in the annual Patient Quality of Life Coalition (PQLC) Lobby Day on Capitol Hill. PQLC consists of over 40 organizations connected by the shared goal of promoting legislative policies that expand access to palliative care and improve patient quality of life. As a founding member of PQLC, ACS CAN has worked for over five years to educate lawmakers and the public about issues surrounding quality of life and pain management through support of PCHETA. In over 100 meetings, PQLC advocates asked members of Congress to support and co-sponsor PCHETA, and with this recent development, it's clear that their efforts did not go unnoticed. 

    Fifteen ACS CAN volunteers from 12 states and the District of Columbia were among those that joined other PQLC advocates to discuss the importance of quality of life with their congressional representatives. One ACS CAN volunteer, Patsy Romero, traveled from California to meet with her congressional representatives. Romero has experience working to gain support for PCHETA with ACS CAN, but was excited to participate in PQLC Lobby Day for the first time. "I have advocated for the bill before, so I'm familiar with the benefits and why it is needed," said Romero. 

    ACS CAN now calls on the House Energy and Commerce Full Committee and the entire House of Representatives to quickly take up and pass PCHETA, to ensure that patients with serious illness like cancer have access to quality care from point of diagnosis.

    To learn more about ACS CAN's advocacy work on palliative care, visit

    TOP PHOTO: The three women in the center, from left, are ACS CAN advocates Nikki Payne, Elena Hicks, and Taylor King, with other members of the Patient Quality of Life Coalition on Capitol Hill after meeting with lawmakers to discuss the Palliative Care and Hospice Education and Training Act (PCHETA). 

  • Cancer patients and survivors call for balanced, comprehensive opioid package

    On June 22, the U.S. House of Representatives passed the Substance Use Disorder Prevention that Promotes Recovery and Treatment for Patients and Communities Act with strong bipartisan support. 

    The bill incorporates several opioid-related bills into one legislative package, and includes key provisions that encourage the development and use of non-opioid medications; improves federal support of state-run prescription drug monitoring programs; increases innovative research on pain treatment; and encourages the safe disposal of unused opioid medications by medical professionals and hospice workers.

    The American Cancer Society Cancer Action Network (ACS CAN) supports many of the provisions included in the House bil,l and continues to advocate for balanced solutions that won't create unintended consequences for patients and survivors living with chronic or acute pain. 

    ACS CAN and the Patient Quality of Life Coalition (PQLC) recently released data indicating that in the past two years, cancer patients, survivors, and others living with serious illnesses have experienced greater difficulty accessing their needed pain medication. 

    To strike the appropriate balance of curbing misuse and abuse of opioids while maintaining access to pain care for patients with legitimate needs, ACS CAN calls on both the House and the Senate to consider the Palliative Care Hospice Education and Training Act (PCHETA). PCHETA (HR. 1676/ S. 693) is bipartisan legislation that would expand pain and symptom management training for doctors, nurses, pharmacists, and others who treat pain patients with serious illnesses that result in chronic or acute pain.

    A statement from Chris Hansen, ACS CAN president, follows:

    "Overall, the House bill passed today is a thoughtful and balanced approach to the very serious public health crisis that has arisen from the misuse and abuse of opioids in this country. Of particular promise are provisions that will increase critical resources for researchers to develop new, non-addictive pain treatments, as well as provisions that will expand state-run prescription drug monitoring programs that have successfully helped rein in the abuse of opioids.

    "While the SUPPORT for Communities and Patients Act makes significant strides toward responding to this public health crisis, we also urge the House and Senate to take up PCHETA, a bipartisan bill supported by 275 House co-sponsors and 29 Senate co-sponsors.  PCHETA would be a substantial step forward in providing doctors, nurses, and other medical professionals with necessary education and training in pain management. Including PCHETA in a final opioid package would help strike an appropriate balance as Congress continues to work to curb abuse and misuse while ensuring access to pain care is preserved for patients with legitimate needs.

    "We look forward to continuing our work with the House and the Senate to adopt important policies that address opioid abuse and misuse while ensuring appropriate access to medications is preserved for those who need it most."

  • Association Health Plan Rule likely to divide insurance market, strip patient protections

    On June 19, the Department of Labor issued final rules governing the creation of association health plans (AHP).

    Under the rule, AHPs would be exempt from current benefit and cost-sharing requirements. Such plans could, for example, exclude coverage for prescription drugs or other essential health benefits, cap coverage based on number of hospital days, and cover less than 60 percent of a patient's medical costs.

    In addition, while the final rule prohibits AHPs from denying coverage based on pre-existing conditions, it does allow such plans to impose different rates on groups based on the age, gender, group size, and location of enrollees. It also allows an AHP that is formed on a geographic basis to exclude certain geographic areas from membership. These changes amount to discriminatory tactics and could have the same effect as considering someone's health history. 

    A statement from the American Cancer Society Cancer Action Network (ACS CAN) follows:

    "This rule will seriously erode the availability of affordable comprehensive coverage in most states' individual and small group markets that is critical to cancer patients and survivors. These products could leave gaps in coverage and could require patients pay very high out-of-pocket costs. AHPs will be able to design products that appeal only to young, healthy, low-risk enrollees, leaving older and sicker Americans to pay ever-increasing premiums for plans that meet their needs.

    "These changes combined with the elimination of the individual mandate penalty and the proposal to extend and expand short-term policies will likely weaken and divide the insurance market to the point where those with any kind of health problems, especially a serious condition like cancer, will have few if any affordable options. 

    "ACS CAN encourages states to take into account patient needs and move to protect and strengthen their insurance markets with state laws regulating these new and potentially damaging insurance products. ACS CAN stands ready to work with state lawmakers in this effort."

  • Patient groups file suit to prevent Affordable Care Act from being struck down

    Patient groups representing millions of Americans with pre-existing conditions filed an amicus curiae or friend of the court brief today in the U.S. District Court case, Texas v. United States, citing the devastating impact patients would face should the court side with plaintiffs and move to invalidate the Affordable Care Act (ACA).

    The groups, which include the American Cancer Society Cancer Action Network, American Diabetes Association, American Heart Association, American Lung Association, and the National Multiple Sclerosis Society, argue the law was intended to help patients and Congress's refusal to repeal the law without a replacement reinforces that intent.

    Twenty states led by the Texas Attorney General (AG) filed a lawsuit challenging the health care law known as the Affordable Care Act (ACA) in federal court in Texas. The plaintiffs in Texas vs. U.S.A argue that because Congress repealed the individual mandate's tax penalty as part of tax reform legislation, the entire law is invalid and must now be struck down.

    Below is the patient groups' joint statement:

    "The critical patient protections in the health care law provide an essential lifeline for millions of Americans who suffer serious illnesses, like cancer, lung and heart disease, diabetes, neurological, and chronic respiratory conditions. Their ability to access affordable, meaningful health insurance is critical to their health and wellbeing.

    "Prior to the health care law, people who needed health insurance the most—older and sicker Americans—found it difficult or impossible to obtain affordable coverage. Denial for pre-existing conditions, outrageous premiums and inadequate benefit packages were often the only available options. Without access to comprehensive health coverage they could afford, patients were often forced to delay or forego necessary health care.

    "Before the ACA more than half of heart patients reported difficulty paying for their care and of those patients more than 40 percent said they had delayed care or had not filled prescriptions. Uninsured patients with diabetes were six times as likely to forgo necessary medical care than those with coverage. Uninsured patients were less likely to be screened for cancer and more likely to be diagnosed with later stage disease which is harder to survive and more costly to treat.

    "Since the law went into effect, uninsured rates have decreased more than six percent nationwide. This has improved patients' ability to prevent, detect and treat their disease. Because of the ACA, there is already a small but statistically significant shift toward early-stage diagnosis for colorectal, lung, breast and pancreatic cancer in states that have increased access to health care through Medicaid because of the law.

    "The health care law, including the individual mandate, Medicaid expansion, tax credits and patient protections essential to chronically ill patients, was intended to increase the number of Americans with health care coverage. Congress's refusal to repeal the law without an acceptable replacement confirms Congress's intent. The courts should respect the will of Congress. Tossing out the law would clearly ignore the will of Congress at the expense of 27 million Americans losing their health care by 2020, according to the nonpartisan Congressional Budget Office.

    "We urge the court to uphold the law and recognize Congress's clear intent to improve access to life-saving health care for millions of Americans."

    View the full amicus brief here

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